Dangerous Vision: Practical Advice for Those Living With Low Vision

Reprinted with permission.

My name is Randolph B. (Randy) Cohen.  I teach finance and entrepreneurship at Harvard Business School, and I am a partner in ExSight Ventures, a small money management firm that invests solely in technologies and therapies related to vision and blindness.  I created this site to share my experiences with vision loss.

One of my hopes for the site is that I and others can share practical advice with folks who, like me, are living with low vision.  I have received many valuable tips over the years from others with vision problems, and I’ve figured out a few things on my own, and I’d like to use this forum to share such ideas more widely.  Many of the most helpful pieces of advice I have relate to products, high and low-tech  both, that I use to be more efficient at getting around and getting things done.

In addition to technology, I’ll share thoughts on other choices one can make to minimize the ways low vision affects your life.  Plus I have a lot of stories about what it’s like living with this, some of which may help fellow sufferers feel less alone, some of which may give their friends and loved ones a sense of the experience, and some of which are just embarrassing enough to be pretty funny.  And I’ll feel free to ramble on about other subjects if I choose!  With luck I’ll also persuade friends and colleagues to pitch in with their thoughts and advice.

“Low vision” covers people in a myriad of different situations, all I can do is talk about what works for me and add the occasional comment about tweaks that might be valuable for people whose vision is poor in ways different from mine.  But I wanted to put this up because low vision is incredibly common but I haven’t seen that much written about managing it.  Most people who address sight disorders are addressing the challenges of the totally or almost-totally blind, and of course those folks are the most in need of assistance, so that’s fine.  But hopefully I can help some people in weird in-between situations like mine.

Some of the ideas here will be helpful to people who suffer total blindness, but in many cases people in that situation will find other products and services more helpful.
It may be useful for some users to know the perspective I am coming from.  I suffer from Retinitis Pigmentosa, a degenerative condition of the retina that is closely related to the more common ailment known as macular degeneration.  Many RP sufferers have 20-20 vision but with very narrow visual fields (“tunnel vision”).  My situation is quite different.  I have substantially reduced visual fields, but not really a “tunnel.”  In addition I have extremely poor visual acuity and high light sensitivity.  As a result I can see things better on a computer screen than in “real life,” but only if the computer is set to “inverted” colors, i.e. black background with white text, or some similar high-contrast scheme.  Once again, the solutions I personally recommend will be of most help to those whose visual impairments are most similar to mine, though some may be helpful to a wide range of users.

A note on nomenclature.  I will use terms like “low vision,” “partially sighted,” “legally blind,” etc. as seems appropriate to what I’m writing about, and I’ll make little effort to distinguish between these terms.  I will also use the self-mocking term “dangerous vision” to describe what I deal with, as seeing the way I do can be physically dangerous, to myself and to those around me, but also because of the positive sense of living dangerously — my eyesight makes life an adventure.  And of course the name is an homage to Dangerous Visions, the seminal fiction collection edited by the great Harlan Ellison.

Read more from Dangerous Vision. 

RandyCRandolph B. (Randy) Cohen is a Senior Lecturer in the Finance Unit at Harvard Business School.

Cohen will teach FIN 1 and FIELD 3 at HBS this year; he will also be teaching Investment Management as a visitor at MIT Sloan School of Management.  He has previously held positions as Associate Professor at HBS and Visiting Associate Professor at MIT Sloan.

Cohen’s main research focus is the interface between the actions of institutional investors and price levels in the stock market. Cohen has studied the differential reactions of institutions and individuals to news about firms and the economy, as well as the effect of institutional trading on stock prices. He also has researched the identification of top investment managers and the prediction of manager performance, as well as studying the market for municipal securities. 

In addition to his academic work, Cohen has helped to start and grow a number of investment management firms, and has served as a consultant to many others.

Cohen holds an AB in mathematics from Harvard College and a PhD in finance from the University of Chicago.

Eyes in Your Pocket: “BlindTool” App Represents the New Frontier of Assistive Technology

A screen capture of the BlindTool app identifying a banana, with less likely predictions listed belowBy Brian Klotz

FastCompany calls it “a peek at an inevitable future of accessibility,” a new app called BlindTool that allows users to identify objects in real time using only their phone, and it was created right here in Boston. Developed by Joseph Paul Cohen, a current Ph.D. candidate at the University of Massachusetts Boston and a Bay State native, it aims to increase the independence of individuals who are blind or visually impaired by putting an extra set of eyes in their pocket.

“I’ve had a desire to do this for a while,” says Cohen, whose initial interest in assistive technology came from working with a colleague who was blind during an internship at the U.S. Naval Research Laboratory in Washington D.C., inspiring him to think of the ways modern technology could improve the lives of those with vision impairment.

The app runs on Android devices, and identifies objects it is pointed at in real time using a “convolutional neural network” that can understand 1000 “classes” of objects. While the technology behind it may be complex, its usage is simple: wave your phone around, and the app will cause it to vibrate as it focuses on an object it recognizes – the more it vibrates, the more confident it is. Once it’s fairly certain, it will speak the object aloud.

“It always has a prediction,” Cohen explains, regardless of where it is pointed, so the vibration function allows the user to zero in on objects the app has more confidence in identifying. Continue reading

Ready to Launch: Assistive Technology Helps People with Visual Impairment Enjoy Public Places in a New Way

A photo of a smartphone in the LaunchGuide location, with a sign reading "BRAILLE TRAIL START" pointing to the phone in the wire guides and a caption on the photo that reads "[smartphone:] Welcome to the Dennis Braille Trail"

LaunchGuide in action at the Dennis Braille Trail

Post by Brian Klotz

If you’ve been to a number of locations in Massachusetts, including the Dennis Braille Trail in Dennis, MA, you may have noticed something new: a device with a QR code that can be read by your smartphone. Called LaunchGuide, this new device was created to help people with visual impairment enjoy public places with content that not only helps them navigate, but adds to the experience, and it is yet another example of the creative ways assistive technology is becoming more prevalent.

Designed by an assistive technology company called COMMplements (the brand name of products of Peacock Communications), LaunchGuide can be used by anyone with an Internet-connected device capable of reading a QR code. Each LaunchGuide location is equipped with a wire guide that helps the user position their smartphone so it can read the code. This takes them to a webpage with content unique to that location – for example, information about the exhibits in a museum or the stops along a trail, which the user can have read to them using text-to-speech as they explore.

An example of a QR code

An example of a QR code

By housing content on a webpage, users can select how and in what order they experience it, as opposed to a linear audio tour. Continue reading

I Won’t Know Unless I Try

Post by Brian Klotz

Ellie Leach at MABVI's Senior Connection 2014

Ellie Leach at MABVI’s Senior Connection 2014

Ellie Leach had never used a computer. No email, no games, no web browsing – as she puts it, “I had never even used a typewriter!” Over twenty years ago Ellie, now 78, was diagnosed with macular degeneration, a medical condition that causes vision loss, putting yet another obstacle between herself and tech-savviness.

Today, however, Ellie is the proud owner of an iPad, which she uses to email friends and family, play games, and listen to her favorite music.

“It’s like I’m alive again,” she says. “I feel like I’m a part of everything again.” Continue reading

For the Love of the Game

Post by Brandon Cole

Brandon posing in front of a Lego Batman booth at Ohio Comic Con 2014

Brandon posing in front of a Lego Batman booth at Ohio Comic Con 2014

My name is Brandon Cole, and I am a gamer. Some people are surprised when I tell them this. “But wait, how can this be? Are you not blind?”

Yes, I am indeed totally blind, and no, playing video games is not an easy undertaking, but it is possible.

When I was young, though, I dismissed video games as something that I simply couldn’t participate in. After all, the word “video” is in there, right? Well, one day my older brother played a trick on me. He handed me a Nintendo controller and invited me to play Super Mario Brothers.  The game began, and before I knew it, I was slaying monsters, collecting coins and extra lives, conquering castles, saving the Princess… except I wasn’t. He had been the one really playing the game, and the controller he handed me wasn’t actually controlling anything. I was crushed. The trick had an unforeseen consequence, though: I got the itch. I vowed to try more games on my own, when he wasn’t around, and I vowed I would win on my own.

And that’s exactly what I did. I went back to Mario Brothers, and through a bunch of trial and error and learning what my limits were, I eventually completed the first level. That’s as far as I got, but it was enough to prove to myself that I really could do this. I began playing more games, experiencing both success and failure in varying doses, but I was hooked. Continue reading

Visually Impaired? There’s an App for that.

Want to know how much money you’re holding? How about the color of your shirt? Or maybe you just want to curl up with a book? If you’re one of the over 20 million adults in America alone who suffer from vision loss, these everyday actions can be cumbersome and difficult. What can you do to help with these daily tasks while retaining your independence?

Reach for your iPad, of course.

As technology becomes increasingly intuitive and user-friendly, more and more visually impaired people are embracing high-tech solutions for their everyday needs. And while of the 20,000 apps developed each month, many are, shall we say, less than useful (for only $1.99, “Melon Meter” uses the iPhone’s microphone to measure the ripeness of watermelons!), several developers are using the capabilities of modern technology to aid visually impaired individuals in innovative ways. We’ve taken a look at just a handful of such apps now available for iOS (most of which you can get for the low, low price of FREE!): Continue reading

Using Technology in Our Everyday Activities

Jennifer Kaldenberg at Senior Connection giving her keynote talk on technology

“How many of you use technology to complete your daily tasks?”

The speaker is Jennifer Kaldenberg, MABVI Clinical Director & Clinical Assistant and Boston University Professor. She has also worked for the New England College of Optometry and their clinical affiliate the New England Eye Institute, specializing in working with individuals with visual impairment. She is an expert in vision loss, facing a room of hundreds of low vision support group members, many of them seniors. Only about 25% of the adults in the room raise their hands.

“If I told you using a magnifier, or even a bump dot to identify the start button on the microwave is technology, how many of you would now answer that they use technology on a daily basis?” She asks.

All of the adults in the room raise their hands.

Two of the guests at Senior Connection raising their hands in response to Jen Kaldenberg's questions

Two guests at Senior Connection raising their hands in response to Jen Kaldenberg’s questions

It seems these adults with vision loss use technology every day without even realizing it. Furthermore, it seems many have not been shown or assessed for what technology is appropriate for them. The key is training, according to Kaldenberg: individuals can be trained to use new tools to help maintain participation in the things that are important to them and improve their daily lives. Equally important is an eye examination by a low vision specialist. Yet only 75% of the audience self-reports having ever had a low vision exam. For individuals who have not had a low vision exam or know someone hasn’t, there are many barriers that may limit someone’s ability to access services including: o Lack of awareness of services or assistive devices o Giving up hope that there is help o Having heard “nothing can be done” o Other health issues like cognitive deficits o Lack of financial resources to afford or think they can’t afford technologies Additional barriers may include age, gender and ethnicity. Some of these barriers are the perception of the individual and others are placed on them by a healthcare practitioner, family members, or society. Of the 75% who have received a low vision exam, only 1/10 say their doctor has asked them what they want to be able to do. So how are visually impaired adults supposed to find the technology they need to remain independent?

“Be proactive and ask your doctors about technology,” Kaldenberg says.

Emerging technology is becoming more task specific and requires more training. Research indicates that the average person with a visual impairment uses 6.1 assistive devices, many which are task-specific. Often times, these devices are purchased by the individual through a catalog or are given to them by a family member of friends and not recommended by a low vision specialist. Recent studies report a high rate of assistive device abandonment, nearly 20%, among those with visual impairment. Reasons for device abandonment include the devices are ineffective, they are using other devices, they do not like the device, the device is defective, they have had a recent change in their vision, they do not have the space to accommodate the device, or they are unable to use the devices. Over the next 20 years, the number of individuals with visual impairments is going to increase greatly, so we need to explore new strategies to assist people in remaining active and help them retain their independence. “If individuals can be trained to use new technological devices properly, they will be able to do everything they could with sight.”


More adaptive technology resources: Adaptivision The Carroll Store Freedom Scientific ABISee Let’s Go Technology Check out this video of Jennifer Kaldenberg discussing OT/vision rehabilitation from our YouTube channel:

What low vision specialists can do for diabetes patients

Whether you have cataracts or glaucoma, vision loss doesn’t mean saying goodbye to your daily routine. With help from a low vision specialist, people with diabetes and vision loss can manage their health and continue to live fulfilling lives.

Diabetes can cause vascular changes in the retina, which can cause blood vessels to leak blood products, and if they leak into the center of the retina (known as the macula) it can cause blurry, distorted vision. Diabetes can also increase the risk for developing other conditions such as glaucoma and cataracts.

That’s where the low vision specialist comes in. While optometrists perform exams and check-ups, low vision specialists are key for patients who want to monitor their vision loss and find new ways to continue their daily routines.

“The comprehensive eye examination has been done by others. We’re focusing on visual function and trying to help our patients do what they need to do on a daily basis,” says Dr. Philip Silver, the low vision specialist at the Joslin Diabetes Center.

Dr. Silver, who has worked at Joslin for more than 20 years, helps people with diabetes maintain their current level of vision and adapt to whatever vision loss they experience.
“Just improving patients’ quality of life by maximizing their vision keeps me going every day,” he says.

Low vision specialists help determine if factors aside from a patient’s diagnosis could be contributing to vision loss. Some patients may be diagnosed with diabetic retinopathy or degeneration, but not discover until later that they also have cataracts and glaucoma. Cataracts can make the lens cloudy, and glaucoma can damage the optic nerve, both causing more vision loss if left untreated. Detecting other conditions early on could make the difference between a patient having 2200 vision (legal blindness) and going completely blind, Dr. Silver says.

“It’s not just focusing on one disease that a person was diagnosed with,” he adds. “There are other things that have to be ruled out too.”

Technological advancements have made controlling diabetes, and thus one’s vision levels, easier for patients. Today patients can use insulin pumps and glucose monitors to maintain normal glycemic levels and blood sugar levels.

However, low vision specialists do not only monitor the effects of diabetes on vision. They also must assess patients’ current vision levels and their goals. By learning those details, low vision specialists can direct them to the right devices and therapy options to adapt to their vision loss.

Among the most common tools are magnification glasses or handheld magnifiers. One of Dr. Silver’s patients who loves to travel has a telescope mounted in her glasses to read gate signs. She also uses bifocals so that she can read. Other patients may use large print labels on their medications or household items, as well as smartphone applications that help with reading or labeling.

Low vision specialists may also send patients to occupational therapists who may help make their houses more adaptable or help them use certain devices at home.

“We’re not going to restore your vision, unfortunately, but we are going to try to maximize the vision that you have left,” he says. “There’s so much that can be done for a patient who is either losing vision or has lost vision that they owe it to themselves to get a low vision exam.”

WATCH: An Introduction to low vision optometry

Medication Management: Tips from an OT

Occupational therapist Anne Escher leans over the shoulder of a visually impaired elder during an occupational visit.

Occupational therapist Anne Escher leans over the shoulder of a visually impaired elder during a vision rehabilitation visit.

Anne Escher is an occupational therapist who teaches at Boston University Sargent College of Health and Rehabilitation Sciences. She specializes in acute care, low vision and rehabilitation.

As an occupational therapist I am always trying to help people be as independent and safe as possible with their daily activities. Each person is an individual and my clients demonstrate different levels of visual impairment as well as different daily routines they have already established. Appropriate OT interventions for medication management differ from person to person, but there are some “low-tech” ideas that could help many people. Continue reading

My Trekker Breeze and I

Adrian

The fear of getting lost was one of the biggest challenges I had to overcome when I lost most of my eyesight 19 years ago. It took me months to feel comfortable just walking around my familiar neighborhood.

Once I had gained some confidence, I began to jog farther away from my home. My expeditions often led me to asking other pedestrians for directions in order to find my way back. It was frustrating to many times get ignored or get the wrong information.  This all changed a couple of years ago when I got the Trekker Breeze talking GPS device from my local Department of Rehabilitation.

The Breeze has made a huge difference in my everyday life. This amazing handheld device audibly lets me know my exact location, as well as upcoming intersections, and location of landmarks and shops nearby. Gone are the days of guessing my stop when riding the bus. The Trekker’s step-by-step directions make it incredibly easy to find any address or place.

Earlier this year, while training for my first American River 50 mile Endurance Run, I relied on my Breeze to guide me to my favorite fire road trail which is in the Santa Monica Mountains. Although my wife and a friend were more than happy to give me a ride there, it was incredibly rewarding to navigate the meandering route to the trail by myself. As a result, I have now gained back a great deal of the independence I had when I was fully sighted.

The Breeze was designed as an orientation aid. It detects your location through the Global Positioning System, GPS, and relates it to the digital maps of your area.  The GPS system uses electronic maps, saved in the SD card, to provide detailed and handy information about all street names and ranges of addresses, as well as points of interest such as banks, restaurants and pharmacies.

photo

Using the Breeze, you can record new routes while walking them. The system then provides step-by-step instructions on how to navigate them. With Breeze you can explore your surroundings and let the system describe them as they’re found along the way. If you wish to return to your point of origin, Breeze can help you retrace your steps. The system also allows you to record landmarks and reference points along your route, and they’re announced as you go by them.

Taking all of these into consideration, I only have a couple of criticisms about the Breeze. This device already comes equipped with a digital map of your home state. If you travel out of state, however; you’ll need to purchase an additional DVD with the rest of the United States. Although the DVD is only $100, the SD card can only hold four state maps at a time. My second concern is how long it sometimes takes the Breeze to acquire the GPS signal. Depending on the sky conditions, it can sometimes take up to 10 minutes. This slight inconvenience, however, is no big deal when compared to the many benefits it offers. At a retail price of $499, this device is a worthwhile investment for any visually impaired individual seeking more independence.

This post was written by Adrian Broca.