OE Patients

Tag: macular degeneration

  • The Anti-AMD Diet

    The Anti-AMD Diet

    The Anti-AMD Diet: New perspectives

    While Age-Related Macular Degeneration (AMD) is commonly believed to be caused by uncontrollable risk factors such as family history, light color eyes, female gender, genetics and advanced age, mounting research suggests that preventing AMD may be more in our control than we think. Improving nutrition habits through small dietary changes has been found to prevent and slow the development of AMD, a leading cause of vision loss in the United States.

    Many studies, including the Age-Related Eye Disease Study (AREDS) and AREDS 2, have shown the benefit of micronutrient supplementation in delaying the progression in patients with intermediate to advanced AMD. Many popular brands of eye vitamins now contain the study’s daily recommended daily formulation: 500 mg vitamin C, 400 IU vitamin E, 40 to 80 mg zinc, 2 mg copper, as well as 10 mg lutein and 2 mg zeaxanthin.

    Healthy, Mediterranean-Style Eating

    Collage of nutrient-rich fruits and vegetables

    Diets rich in green leafy vegetables like kale and spinach, fruit and berries, nuts and legumes, and fish is the whole food counterpart to the AREDS supplement recommendation that is not only cancer-protective and heart-healthy, but a dietary line of defense against developing AMD, especially among high risk people.

    Consumption of flavonoid-rich foods, specifically, has additionally been found to prevent AMD. Flavonoids are a type of polyphenol and powerful antioxidant found in many fruits and vegetables, as well as dried herbs, tea, red wine, and dark chocolate. A 15-year study conducted by the Westmead Institute for Medical Research on over 2,000 Australian adults over age 50 found that those with the highest consumption of total flavonoids, had the lowest odds of AMD by as much as 60 percent. Some of the foods highest in flavonoid content include: dried parsley, fresh capers, dried oregano, green tea, black tea, dark chocolate, leafy vegetables, onions, apples, berries, cherries, soybeans, and citrus fruits. 

    Macronutrients Matter Too

    On the contrary to a diet rich in plant-based foods, diets high in fat, which is one of three main macronutrients, are strongly associated with a higher incidence of AMD. The Western style or standard American diet, which is a common style of eating among people living in the United States, is comprised largely of high-fat foods like full-fat dairy, butter or margarine, processed and red meats, sweets and desserts, refined white grains, and French fries. Not surprisingly, this diet is also strongly linked to higher rates of overweight and obesity. A large epidemiological study by Adams et al, which followed over 21,000 participants enrolled in the Melbourne Collaborative Cohort Study, separately confirmed abdominal fat as an independent risk factor for both early and late stage AMD. A study by Zhang et al found that having an elevated body mass index (BMI) increases the risk of AMD in a dose-dependent fashion, with 2% increased risk for each 1 kg/m2 increase in BMI within the overweight and obese BMI ranges. 

    More Research Indicates Importance of Nutrition 

    More recent studies are exploring the role of carbohydrates and the gut microbiota in AMD. The gut microbiome, or gut flora, are the trillions of microorganisms, including bacteria, archaea, fungi, and viruses, that live in the human digestive system. Consuming too much sugar, which is a carbohydrate, has been linked to obesity and many metabolic diseases, including diabetes and heart disease. A more recent experimental study in mice examined the effect of diets high in glucose, a simple carbohydrate, on the gut microbiome and AMD. In the animals fed a high glucose diet, there was a marked increase in harmful gut bacteria, which has been found to be related to greater retinal damage. In the mice fed a low glucose diet, on the other hand, there was a marked increase in beneficial gut bacteria, which has been associated with protection against AMD. While this research is new, it shows some promising and novel nutritional approaches to combat AMD.

    Your Anti-AMD Game Plan

    Older couple looking down happily at basket of fresh fruits and vegetables.

    Next time you are in the supermarket, don’t forget: the choices are yours, remember to protect your eyes, and your health, through good food selection. Try to form an anti-AMD game plan that includes a variety of nutrient-rich colorful vegetables, fruits, healthy proteins and lower fat foods.

    Here are 7 steps toward an eye-healthy diet:

    • Aim for 1-1/2 to 2 cups of dark green vegetables each week, such as broccoli, bok choy, collard greens, dark green leafy lettuce, kale, mustard greens, spinach, turnip greens, and watercress.
    • Make flavonoid-rich foods a regular part of your plate or cup: dried herbs, green or black tea, onions, apples, berries, cherries, soybean, and citrus fruits. 
    • Find ways to include 1 to 2 cups of beans and peas throughout the week, like lentils, chickpeas, dried or canned beans, green peas, and peanuts.
    • Get your zinc naturally with seafood, chicken, pork, liver, eggs, wheat germ and fortified breakfast cereals. 
    • Aim for 2 servings of omega-3 rich fish per week, such as salmon, sardines or mackerel. Replace regular fat foods with low fat versions, like low fat or non fat milk and cheese, and incorporate foods that are high in good fats, such as avocado, olive oil, nuts, and eggs.
    • Replace regular fat foods with low fat versions, like low fat or non fat milk and cheese, and incorporate foods that are high in good fats, such as avocado, olive oil, nuts, and eggs.
    • Include regular activity throughout your day to help manage weight or lose abdominal fat. 

    An Anti-AMD Recipe For You

    Try your hand at this nutritious and delicious salad mix.

    Mixed salad with cutlery and shakers against a polka dot tablecloth.

    Fennel & Orange Salad with Toasted Pistachios

    Ingredients

    • 2 navel oranges, peeled, quartered and thinly sliced
    • 1 small bulb fennel, quartered, cored and very thinly sliced crosswise
    • 1 cup very thinly sliced radishes, (about 8 radishes)
    • ¼ cup coarsely chopped fresh cilantro
    • 2 tablespoons extra-virgin olive oil
    • 1 tablespoon plus 1 teaspoon lime juice
    • 6 tablespoons shelled and lightly salted pistachios, toasted and chopped
    • ¼ teaspoon salt
    • Freshly ground pepper, to taste

    Directions:

    Combine orange slices, fennel, radishes (or jicama), cilantro, oil, lime juice, salt and pepper in a bowl. Gently toss to mix. Just before serving, sprinkle nuts over the salad.

    Nutrition Facts per 1 cup serving:

    181 calories; 12 g fat (2 g sat); 4 g fiber; 17 g carbohydrates; 4 g protein; 46 mcg folate; 0 mg cholesterol; 9 g sugars; 797 IU vitamin A; 50 mg vitamin C; 71 mg calcium; 1 mg iron; 176 mg sodium; 470 mg potassium

    This article was previously published Feb 5, 2019 and updated Jul 9, 2024.

    Recipe via EatingWell.

    Written by:

    Michelle Milgrim, MS RD CDN CCMS, is a registered dietitian and culinary nutrition specialist with a food-first approach to health promotion and disease prevention. She is a clinical dietitian for Foodsmart and supports personal well-being goals in her own private practice.

    Jennifer Young, Dietetic Intern, Northwell Health.

  • Bernard Landou’s Legacy of Service

    Bernard Landou’s Legacy of Service

    We pay tribute to our longtime colleague and friend, Bernie Landou, who passed away at age 90. He was a veteran of the United States Military and served in the Korean War. He spent several decades working professionally in the business of public relations and enjoyed recounting his legendary assignments and encounters with celebrities. Upon retirement he indulged his love for fine cuisine by attending the French Culinary Institute in New York. He enjoyed sharing his skills to impress friends and family and went on to teach inmates at the Rikers Island Correctional Facility, to cook. 

    Bernie was affected by age-related macular degeneration and rose to the challenges of vision loss, with the support of his partner of 50 years, Dick Leonard. He became a volunteer with the Association for Macular Diseases at Manhattan Eye & Ear Hospital. He answered phone inquiries and requests for information and contributed to the quarterly Eyes Only Newsletter. He loved helping others with useful tips for daily living and low vision friendly recipes. His volunteer service, with the Association, led him to assume the role of Editor for the newsletter in 2007, then President of our Board of Directors in 2017. 

    Bernie Landou at 85 and as a young man in the US Military.
    Bernie Landou at 85 and as a young man in the US Military.

    We applaud Bernie Landou for his years of enthusiastic service to people with macular diseases and low vision, as he found his own way with increasing vision loss. He possessed a sharp wit and a special gift for stating the obvious. He pointed out, as we were about to launch this website in partnership with Ophthalmic Edge, that “nobody knows how to spell Ophthalmic,” and he was right. We shortened our website name to “OE Patients” to resolve that conundrum. Thanks Bernie!

    Here are 6 of Bernie’s articles, originally written for Eyes Only, now published on OE.

    Choice Magazine Listening
    Choice Magazine Listening

    Choice Magazine Listening

    A precursor to audible magazines, established in 1962 for people with vision loss.

    Read Now

    Ophthalmologist examining a patient's eye.
    Ophthalmologist examining a patient’s eye

    Charles Bonet Syndrome 

    Advancing vision loss somethings causes pleasant visual hallucinations. 

    Read Now

    AutoDrop is a Real Eye Opener 
    AutoDrop is a Real Eye Opener 

    AutoDrop is a Real Eye Opener 

    An easy solution for getting the drops in you eye.

    Read Now 

    A stand lamp with the light on in a dark living room.
    A stand lamp with the light on in a dark living room.

    Home Safety & Light Checkup

    Good solid advice to keep your home low vision safe.

    Read Now

    Portrait of a smiling family with two children at beach in the car. Holiday and travel concept
    Portrait of a smiling family with two children at
    beach in the car. Holiday and travel concept.

    Keep the Sun Out of Your Eyes

    Protecting your eyes from the damming sun has never been more important. 

    Read Now 

    GATEWAVE RADIO AUDIO FOR INDEPENDENT LIVING
    GateWave Radio Audio for Independent Living

    GateWave Radio Audio for Independent Living

    Radio programming specifically for a visually impaired audience. 

    Read Now

  • 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 

  • 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. 

     

  • Communicate Better with Your Doctor

    Communicate Better with Your Doctor

    A visit to your eye doctor can come and go in a blur. Discussing a loss of sight is a dreadful thought — however, avoiding it will not yield positive results either. Time with the ophthalmologist may be brief, so it is important to be prepared and engaged. Considering these steps, before every appointment, will help you be an informed patient.

    • If you do not understand something the doctor says, or the terminology used, feel free to say, “I don’t understand, please explain.” Don’t be afraid to speak up.
    • Summarize back what you heard, to clarify your understanding. “So you are telling me that age-related macular degeneration will make me blind?” The doctor responds, “No, I am saying that there will be some loss of your central vision, possibly to the level of legal blindness, but macular degeneration does not cause total blindness.”
    • Request written materials, or even pictures or videos that you can take time to understand and absorb at home.
    • Ask about best-case and worst-case scenarios, and what is the most-likely scenario for you?

     

    Image of ophthalmology office activity.

    • Write your questions and bring someone with you as an advocate, to read the questions on your behalf, and to take notes.
    • If treatment is available, understand the risks involved. “Can injections in the eye cause glaucoma?” 
    • Ask if there is someone you can talk to, who is living with the condition, or has received the treatment.
    • If treatment is not available, ask for alternative therapies or lifestyle changes that may help your longterm prognosis and quality of life. Don’t accept “nothing can be done” for an answer.
    • If you are told nothing can be done to improve your vision, ask your ophthalmologist for information and resources to help you live successfully with vision loss, including referral to a low vision specialist and vision rehabilitation services.

    It is crucial to be an Informed Patient when considering treatment or potential participation in a clinical trial. Clearly review, discuss and weigh the possible benefits against the risks. Consent forms are often many pages of medical and legal jargon — challenging for anyone to read, but especially hard with a visual impairment. Do not sign or agree to anything you have not read and understood completely.

     

  • A Tribute To Jerry Rosenberg

    A Tribute To Jerry Rosenberg

    Our friend and colleague, Jerry Rosenberg, passed away on November 5, 2019, his 89th birthday.  He was a loving husband, father, grand and great-grandfather.  He lived life with purpose, not allowing progressive vision and hearing loss or age, to thwart his mission to help others.  Jerry chaired a support group, affiliated with the Association for Macular Diseases, for more than two decades.  He loved to write and never stopped, his second book was published just weeks ago.  He will be missed, but not forgotten.

    Jerry’s distinct voice will continue to be heard through his articles published on the pages of OE Patients.  We are honored to share a bit of his legacy with this memorial tribute.

    Little girl eating ice cream over blue background.

    Grandpa, You Can See That?

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    The vision loss of a family member or friend is not always easily understood by those around us.  In this article, Jerry offers an honest assessment with a healthy dose of humor.

     

    Process of cataract surgery in modern clinic.

    Cataracts Removed, Vision Improved

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    After years of advice not to remove cataracts, Jerry gets the go ahead and reports an excellent outcome.

     

    Older man using smartphone at park during the summer
    Content older man using smartphone at part in summer.

    You’re Never Too Old To Learn

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    In this post, Jerry reminds us that age should not be a barrier to leaning something new, particularly for those of us with vision loss, there is much to gain in adopting and adapting.

     

    Happy senior man using computer at home office.

    Hooray For Inclusive Technology

    Read Now

    With the help of multiple accessible technologies, the writer in Jerry Rosenberg, does not skip a beat.

     

    Ophthalmologist checking patient’s eyes on white background.

    A New Doctor, A New Course

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    Jerry reminds us, sometimes when least expected, a new doctor will give you a whole new perspective.

     

    Senior man smiling while using digital tablet in living room.

    ICanConnect Promotes Equal Access

    Read Now.

    Because Jerry was both legally blind and hearing impaired he was able to benefit from the ICanConnect program, receiving computer technologies and training that enabled him to communicate digitally and continue writing.

     

    Jerry Rosenberg is the author of two books, The Speechwriter and My Granddaughter “The Junkie” – available on Amazon.

     

  • Cataracts Removed, Vision Improved

    Cataracts Removed, Vision Improved

    For many years I asked my retina specialists (and there have been many) about the removal of cataracts.  For the most part they all said, “The risk isn’t worth the reward.”  Then finally, my current physician, Dr, Michael Tolentino, agreed it was time.  He said his perspective changed from that of caution and concern that the surgery could exacerbate the underlying macular degeneration.  He was beginning to see that patients who opted to have the cataract removal procedure were getting very good results in terms of clearer and brighter sight. 

    Dr. Tolentino recommended Dr. Melissa Iglasius, who he said was very competent and experienced in cataract surgery.  I interviewed the surgeon, and she gained my complete confidence.  Dr. Iglasius said definitively, “Standard surgery is sufficient, no need for laser or crystal lenses.”  There would be no additional out of pocket expense.

    I had both eyes done, within the last four weeks and the results are truly amazing.  Bear in mind that my visual acuity was 20/400 in the left eye and 20/200 in the right.  Before the surgery I could not see the letters on a ZoomText large print computer keyboard.  I can now see the letters clearly.  At this point I can also make out items in the fridge, that I could not see before.  The clarity in my peripheral vision is noticeably improved.  I still have macular disease, but the increase in light is a big step up.  The eye drops are to be continued in the right eye for 16 days, so there is potential to regain more clarity.

    Illustration showing normal eye on the left and eye with cataract on the right.

    When asked, at the support group meetings I run, about the removal of cataracts with AMD, my reply was always, “Discuss it with your retina specialist.”  The fact remains, a careful review of the possible risks and rewards of any medical treatment, should be addressed with your physician.  Today, based on my experience, I would also be inclined to encourage others to explore the options with an open mind.

    Cataract surgery is over in 15 minutes, recovery from anesthesia, depending on which one you chose, is relatively short.  It is well advised to adhere to the follow up instructions including a regimen of drops, no bending over, no rubbing the eye, and using anti-bacterial cleanser.  In my case, the reward was certainly worth the risk.  Thanks to Dr. Iglasius.

     

  • Nate’s Low Vision Makeover

    Nate’s Low Vision Makeover

    Nate Berkus is looking at home design through the prism of low vision and we are delighted to receive his expert advice.  He knows color contrast and he knows lighting.  He knows how progressive vision loss can make it difficult to see the details in your own living space.  He understands this because his grandmother had macular degeneration.

    The celebrity interior designer and author, launched My Home In Sight to empower people living with wet AMD, in collaboration with Novartis and patient advocacy groups.  The program information is by no means limited to such a specific audience and offers benefit to a much broader scope of low vision patients.

    The program highlights 5 key principles that can help create a home environment that is not just easier on the eyes, but also safer and more comfortable.  Nate reminds us how important it is to love our home, and making it more accessible for vision loss does not require sacrificing style.

    “My Home In Sight kit” includes inspiring ideas for your home focused on:

    • Color & Contrast – Adding contrast in furniture, accents and objects improves the utility and function of every room. When it comes to color choice — go bold!
    • Safety – Using contrast to highlight the edge of steps will greatly improve visibility and safety. Contrasting door frames, dishes, mugs and drinking glasses make accidents less likely to happen.
    • Lighting – Throwing more light on the subject can totally improve how well you see everything.  Changing light bulbs and adding a gooseneck, lightens the atmosphere.
    • Organization – Get organized so you’ll reach for and find everything in its appropriate place.  Designate a convenient, easy access home for your keys, glasses and mobile devices, so they’ll always be exactly where you left them.
    • Low Vision Tools – Make the most of the tools you have at home including magnifiers, sticky notes, bright tapes and textures.

    It’s all about making adjustments and many of these suggestions have been offered on OE before, but even we must admit, there is something about Nate that makes these ideas irresistible!

  • A New Doctor, A New Course

    A New Doctor, A New Course

    As a member of Humana for many years, I have had to change my retina specialists several times.  I was very happy with the doctor I had for the past year and was surprised when I got a call, from my eye care center, informing me that I would now be cared for by a different retina specialist.  The woman on the phone said his name was Dr. Michael Tolentino, and that he had an excellent background and credentials.  Not taking her word for it, I Googled him.  I learned that indeed this was true, having been associated with the Schepens Eye Institute in Boston that I frequented in the 1980s.  So, I made my first appointment.

    He was very friendly and warm, and surprisingly, not Italian as his name would imply, but from the Philippines.  He told us that his father was a renowned ophthalmologist, associated with Schepens. He, himself had worked in the Schepens lab when he was 14 years old.  I learned that we both knew and respected many doctors that had trained there.

    Upon perusing my records and pictures, he said that he didn’t agree with my previous retina specialist’s decision to skip the eye injection at my last visit.  He showed me the pictures: “See that white part in both eyes, we have to get rid of that, and I’ll give you the shots until we can get your vision better.”  I was amazed to hear a doctor so aggressive.

    My next question to him was: “I have cataracts in both eyes, none of my previous doctors would allow me to have them removed. They said that the risk isn’t worth the reward, which would be minimal.’’  His response was: ‘’What risk? After a couple of shots, you’ll get both removed.”

    I remembered an article on cataracts from Lighthouse International a few years ago, stating that 20% of AMD patients had better visual acuity after cataract surgery.  I also wanted to be one of those 20%.

    Well, I put my faith and my eyes in the hands of Dr. Michael Tolentino and received my first 2 injections of Avastin, done very carefully and expertly.  I’ll keep my readers posted on the results.

    To learn more about cataract surgery and AMD from the American Academy of Ophthalmology…click here. 

     

  • OE Patients: Best Of 2018 Articles

    OE Patients: Best Of 2018 Articles

    This year, we created a roundup of our most popular articles on OE Patients. Our best-of list for 2018 covers technology, health, and tips for making adjustments — from the secret to mastering iPhone’s VoiceOver to accessibility at arts museums.

    We hope you’ll be inspired to develop a new skill or create a good habit for the fresh new year!

    Apple’s iPhone

    10 Things To Know About iPhone Accessibility For Vision

    The iPhone is quite possibly the most adopted device, ever, for people with vision loss. This is because it is accessible out-of-the-box, even if you can’t see the screen at all.

    Discover the top reasons for using the iPhone.

    Let iPhone’s VoiceOver Do The Reading

    Apple’s built-in screen reader was a game-changer for those living with vision loss. Our accessibility expert, Dorrie Rush, writes about the secret to mastering iPhone’s VoiceOver gestures — practice, practice, practice.

    Learn how to master VoiceOver.

    Microsoft

    “Seeing AI” Is A Gift from Microsoft

    We love Microsoft’s Seeing AI, a free, intelligent camera app that translates images into words for people with visual impairments and blindness. Here are four features we especially like.

    Learn more about Seeing AI.

    Microsoft Soundscape 2018, A Review of What It Can Do

    Our accessibility expert Dorrie Rush appreciates the enhanced narration and awareness provided by Microsoft Soundscape, a navigation tool for people with vision loss.

    Read the full review of Soundscape.

    Apps and Technology

    App Happy

    Discover a collection of wonderful apps that empower people with visual impairments in ways we could only once dream.

    Click for our recommended apps.

    Electronic Glasses Event Recap

    In October, OE Patients held an accessibility event on wearable devices for audiences with vision loss.  We took a closer look into head mounted products including: OrCam, IrisVision, Jordy and more.

    Explore featured electronic glasses.

    GoGo Grandparent Gets Uber Without An App

    For older adults who need to get an Uber or Lyft without an app or smartphone, GoGoGrandparent is perfect.

    Find out more about GoGo Grandparent.

    Making Adjustments and Health

    Doctor, Am I Going Blind?

    Every eye condition is different. Read our article by ophthalmologist Dr. Yale Fisher, to understand how vision loss caused by macular degeneration, diabetic retinopathy and glaucoma rarely results in blindness.

    Learn more about vision across eye conditions.

    What Is A Cataract?

    Cataract is the leading cause of reversible blindness and vision loss in the world. Read more by Dr. Amilia Schrier, Director of Education at Manhattan Eye, Ear and Throat Hospital.

    Learn more about cataracts.

    Museums Making Art More Accessible

    From Florence to New York City, museums everywhere are making it easier for visitors who are visually impaired or blind to experience art.

    Find out how museums are opening up art.

  • Charles Bonnet Syndrome: Visual Hallucinations

    Charles Bonnet Syndrome: Visual Hallucinations

    About a year ago, Marjorie Louer began having hallucinations. In a letter sent to the Association for Macular Diseases, OE Patients’ parent organization, Ms. Louer detailed her startling, mysterious experience:

    “The most regular hallucination was a miniature of a woman’s round face, surrounded by bushy gray hair that extended onto the chin. She appeared as a bearded lady. Sometimes three or four images of my bearded lady would appear at the same time. These hallucinations would come and go. Other images were of varying patterns and colors of textile designs and of a New York City subway map.”

    The constant hallucinations distressed Ms. Louer to the point she went to the Emergency Room of a prominent NYC hospital. She spent a night there and completed a series of brain scans and interviews. She also informed the doctors of her diagnosis of macular degeneration.

    The next morning, she left the hospital with no better understanding of the hallucinations. But the reassurance that nothing was wrong with her brain came as a huge relief.

    Solving the Mystery

    Still, Ms. Louer was determined to find out why she continued to hallucinate often enough to puzzle and distract her. She enlisted the aid of her daughter who set out to research the problem on the internet.

    Ms. Louer’s daughter’s work online not only uncovered some important information for her mother but also identified pathways to explore the subject further. She learned that her mother’s condition was known as “Charles Bonnet Syndrome”.

    Bonnet was a late 18th-century Swiss scholar who was trying to cope with the hallucinatory problems of his 87-year-old grandfather who had vision problems.

    According to the Canadian Medical Association Journal, the reported incidence of Charles Bonnet Syndrome in people with vision impairment is 10% to 38%. This wide range is attributed to differences in definition, history-taking, and unwillingness by patients to disclose the symptoms because of concern that it implies mental incompetence.

    “My grandfather is a respectable man,” Bonnet wrote in 1760, “full of health, of ingenuousness, judgement, and memory, who completely and independent from all outside influences, sees from time to time, in front of him, figures of men, of women, of birds, of carriages, of buildings. All of this appears to have a seat in that part of the brain involved with sight”.

    The condition resulted from various signals sent by components of the eye to the brain.

    Historically, not all authors cited loss of vision as a component of the diagnosis. However, the association with vision loss is now widely thought to be a required part of the diagnosis. Hallucinations as part of this Syndrome can occur in patients of any age with any type or degree of visual loss.

    Takeaways

      • Patients with loss of vision may experience vivid recurring visual hallucinations, such as formed images of people or animals.
      • If you should experience the hallucinations, discuss it with your eye specialist. There are a number of things that might help the situation.
    • If you consult doctors other than eye specialists about these hallucinations, inform them of your vision impairment.

    We are very grateful to Marjorie Louer and her very helpful daughter for raising awareness about an important, common problem for people diagnosed with vision loss.

    Originally published on December 15, 2016 and updated on September 25, 2018.

  • Put Sunglasses On Your Kids, The Benefits Are Long Term

    Put Sunglasses On Your Kids, The Benefits Are Long Term

    The natural inclination to protect our children from harm has for many decades included sun protection. On any summer day, at a whole host of outdoor venues, parents can be seen diligently slathering up their little ones with the prescribed application (and re-application) of sunblock. It only makes sense that protecting young eyes from the damaging rays of the sun should also be a priority, right?

    Grown-ups, for the most part, automatically put on the shades at the beach and during outdoor activity. This is behavior we like to see kids mimic.  Young children and adolescents are most vulnerable because their eyes do not filter ultraviolet light as well as adults. The damaging effects are cumulative and irreversible, experts say most of the damage occurs by age 18. This is why the sunglasses must be applied, with the sunscreen, from a very early age.

    Needless to say, helping your kids develop the habit of protecting their precious eyes from sun exposure, will benefit them for decades to come. It might actually help them avoid age-related macular degeneration and cataracts much later in life.

    Sunglasses do not only apply to the summer months, winter offers no reprieve. Children are exposed to the sun’s ultraviolet rays year round. All prolonged sun exposure and sporting activities should be accompanied by protective eyewear (and maybe, even, a brimmed hat). It is best to keep babies, under 6 months, out of the sun entirely, shielded by hats, stroller canopies and umbrellas.

    Here are 4 practical tips for buying children’s sunglasses:

    • Including your children in the selection process will make buying sunglasses fun. If they love the glasses they will be happy wearing them.
    • Be sure to choose sunglasses with lightweight polycarbonate lenses with 100% UVA and UVB protection and maximum impact resistance.
    • Look for frames that are rounded, flexible and have wraparound coverage. They should fit snug and may include a velcro band, good for playing sports. Comfort and style are key factors in selecting glasses your child will keep on wearing.
    • Good quality children’s sunglasses are available in a range of prices.  A higher price is not necessarily indicative of superior quality. If there is any doubt, have the sunglasses tested by an optician to confirm they provide maximum protection. (Note: Sunglasses lacking UV protection can be riskier than no glasses at all, as the dark lens will cause the pupil to dilate, allowing ultraviolet rays to enter the retina.)

    Remember, teaching kids to protect their eyes from a young age will pay off through old age. They’ll thank you for it!