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.
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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. 

Randolph 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.

Videos: Tips for Confident Living With Vision Loss

The Massachusetts Association for the Blind & Visually Impaired brings you life tips for living confidently. These hacks are a peer-to-peer guide on useful techniques to live with vision loss.

Have a tip? Let us know by e-mailing ecarr@mabcommunity.org.

 

Here to Help: Meet Steve Jordan, Director of Orientation and Mobility

By Brian Klotz

Steve Jordan has devoted his career to helping others achieve their goals. As the Director of Orientation and Mobility for the Massachusetts Association for the Blind and Visually Impaired (MABVI), Jordan helps to train individuals in how to navigate their environments safely and as independently as possible.

This desire to assist and motivate others can also be seen in Jordan’s other passion: coaching youth sports. A Massachusetts native currently living in Walpole, Jordan received his Bachelor’s from Framingham State University, and afterwards worked at Newton North High School as both a special education aide and a coach for football, baseball, and wrestling. Today, in addition to his duties at MABVI and as the proud father of five children (including a set of triplets born last February!), Jordan continues to coach all three sports at the Nobles and Greenough School in Dedham.

Jordan always knew he wanted to help people through teaching and coaching, but it wasn’t until he was working at Newton North that he discovered exactly how. As a special education aide, Jordan found that one of the students he was working with one-to-one would leave for 45 minutes twice a week, and Jordan never knew why until he asked if he could come along.

Giving Back

By Brian Klotz

Like many people, Cindy Wentz entered college unsure of what her career path would be. A New Jersey native, she moved to Massachusetts to attend Brandeis University, initially as a Psychology major before switching to Sociology. After graduation, Cindy worked at a bank, but was still unclear on her ultimate career goal until she decided to go back to school, obtaining a Master’s in Rehabilitation Counseling from Boston University.

“I remember in high school I always thought I wanted to work with people,” she says, at first thinking she would become a teacher like much of her family, before deciding it wasn’t for her.

Both Cindy’s desire to help people with disabilities and her tireless work ethic can perhaps be traced back to the discrimination she faced trying to gain employment in her younger years.

“In high school, when everyone else was getting their summer jobs, I had such a hard time,” she explains. Having been blind since birth, Cindy recalls how many employers rejected her because of her disability – and would say so outright.

Meet Megan Briggs, MABVI Director of Vision Rehabilitation

When Megan Briggs came to the Massachusetts Association for the Blind and Visually Impaired (MABVI) in the summer of 2015 as Director of Vision Rehabilitation, she brought with her a wealth of experience in the field. Briggs earned a B.S. in Occupational Therapy from the University of New Hampshire and a Master’s in Healthcare Administration from Worcester State University. Her work has specialized on individuals with disabilities, including vision loss and/or brain injury.

Briggs has experience working in acute inpatient rehabilitation hospitals, acute care hospitals, outpatient facilities, and nursing homes. Prior to coming to MABVI, she worked for the University of Massachusetts providing services for MassHealth contracts, including Prior Authorization, Community Case Management, and ABI/MFP waivers. Her experience in both direct service and administration made her an ideal fit for MABVI’s Director of Vision Rehabilitation role, which allows her to do both. Briggs oversees MABVI’s Occupational Therapists (OTs) in addition to providing OT services herself.

“As the Director of the program,” she says, “I enjoy ensuring compliance and quality, and this job allows me to have the freedom to make change and improve systems. As a treating OT, I like to see people increase or maintain their independence.

Natick Low Vision Peer Support Group serves up food, friendship, and fun

Post by Brian Klotz, Marketing Coordinator for the Massachusetts Association for the Blind and Visually Impaired (MABVI) and Natick High School Class of ’05

Once a month, they meet at the Natick Senior Center, in an often filled-to-capacity room right next to the gift shop. They come to share stories. They come to learn about helpful tips and resources. They come to bond over their shared disability: vision loss.

On this day in late December, however, they have come for the turkey.

A catered spread of turkey, mashed potatoes, stuffing, and other seasonally-appropriate food items (Let’s not forget the pie!) sits on a long table against the window as the members of the Massachusetts Association for the Blind and Visually Impaired’s (MABVI) Low Vision Peer Support Group gather for a holiday feast.

The luncheon, a break in routine from the usual guest speakers and group discussion, has become an annual December tradition for the group.

“It’s fantastic,” says group member and co-coordinator Marge Burrows. “It gets better every year.”

An Inaugural Low Vision Doctor Collaboration

Post by Jen Salvo, OD

I have been working for almost a year now as Medical Director for the Massachusetts Association for the Blind & Visually Impaired. And I have to say, besides the opportunity to hang out with the cool kids on Team with a Vision, the highlight of my year took place last week at the inaugural MABVI Affiliated Low Vision Providers meeting.

What happens when you get a group of low vision doctors together? Crazy good times! Okay, maybe not crazy, but definitely good times and a feel good vibe of camaraderie and collaboration.

A photo of five low vision doctors who attended the MABVI Affiliated Low Vision Providers meeting last week.

In attendance (from left to right) were Dr. Lyuda Sutherland, who sees visually impaired patients at Eye Center of the North Shore in Salem; Dr. Richard Jamara, low vision professor at New England College of Optometry and low vision provider for New England Eye; Dr. Jane Orenstein, who sees visually impaired patients at her practice in Whitinsville; Dr. Jennifer Salvo (yours truly), who provides low vision exams for MABVI in Holyoke and Springfield and at Metro West Low Vision in Wellesley and Hyannis; and Dr. Caroline Toomey, who performs low vision exams at MABVI’s Worcester location. Missing from the photograph is Rev. Arthur T. MacKay, OD, who serves visually impaired patients in Wellesley, Newton, and Natick.

Our newly formed band of low vision docs eagerly shared information and concerns about the dreaded topics of Meaningful Use and Electronic Medical Records and their impact on our practices. Dr. Jamara discussed his work with the Massachusetts Commission for the Blind (MCB) and how MCB is working to facilitate the registration of legally blind patients with the Commission.

We talked about bioptic telescopes, which are mounted in eyeglasses. Bioptics can be used for viewing street signs or in school settings to view the board at the front of the room. The focusable ones can also be used for near tasks and detail work. With the aid of a bioptic telescope, a small number of patients, whose vision falls within a certain limited range, are able to drive again with a restricted license.

A photo of Dr.Salvo’s father in law using a bioptic telescope

Here is my father-in-law modeling a bioptic telescope (he is a good sport). As you can see, the telescope sits above the eye so it doesn’t block vision through the glasses. This particular model cannot be used by drivers in Massachusetts because it is focusable. Imagine the havoc wreaked by a driver trying to focus his telescope as he drives down the highway!

For those individuals who are candidates to use a bioptic for driving, the challenge is to make sure they are able to drive safely while wearing and using the telescope . At our meeting we shared information about local adaptive driving training programs that can provide these patients with training and assessment.

We also discussed the difficult aspects of a low vision doctor’s work—telling patients that they should no longer be driving or that they are legally blind. We recognize that for many people the hardest part of vision loss is the loss of independence and the feeling of isolation that can result from losing one’s driver’s license. When counseling these patients, I encourage them to attend a local low vision peer support group. A person struggling with the challenges of vision loss can greatly benefit from the support of peers who are also visually impaired and dealing with some of the same issues.

Another issue of importance to low vision providers is how to help our patients maximize the effectiveness of the devices we prescribe for them. Without proper training, lighting or ergonomics, low vision devices often wind up unused and in a drawer. Dr. Toomey and I shared how invaluable it is to work with MABVI’s occupational therapists (OTs) who provide patients with in-home vision rehabilitation. The OTs not only train patients to use prescribed devices for performing tasks and activities, they also provide home lighting and safety assessments and strategies, help patients to maintain compliance with medications, connect them to other agencies and services, and help improve patient satisfaction and outcomes. Here is one of our OTs, working with a happy patient!

An OT helping a low vision patient

All in all, it was a productive first meeting, and a great opportunity to relax and chat and network with peers. Truth be told, we low vision doctors are considered a bit odd by our fellow optometrists, since we work with patients with serious eye conditions, but we don’t treat the disease—we treat the person, focusing on helping them to function in their daily lives. With the history-taking, identification of goals, and the low vision assessment, our exams can last an hour and a half! (Many a patient has told me, patting me on the arm on their way out of the exam room, “You must have the patience of Job.”) We are anomalies in the increasingly fast-paced medical world. So the opportunity to gather with my fellow low vision doctors means a lot to me. Our “low vision doctor support group” as they are calling it at MABVI, is a wonderful way for us to share ideas and concerns and to learn from each other. Our collaboration will benefit not only our professional growth, but our patients, as we share ideas on how to better help them achieve their goals and improve their quality of life.

If you are interested in becoming a MABVI Affiliated Provider, please contact Jennifer Salvo, OD at jsalvo@mabcommunity.org or email Shaun Kinsella, MABVI’s statewide director, at skinsella@mabcommunity.org.

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

Worcester Vision Rehabilitation Center to participate in Greater Worcester Gives

A female client meets with Dr. Toomey-Gitto for a low vision exam. MABVI offers low vision exams at its Worcester office, as well as several other locations.

Post by Steph Solis

On May 6, the Worcester office will participate in a 24-hour online giving day, called Worcester Gives. The campaign, organized by the Greater Worcester Community Foundation, encourages the community to support local nonprofits including the Worcester Vision Rehabilitation Center.

MABVI’s Worcester Vision Rehabilitation Center celebrates over 50 years providing services to blind and visually impaired individuals in Greater Worcester. Last year alone the office worked with more than 300 blind and visually impaired clients through low vision exams, volunteer services, support groups and more. At the Worcester Vision Rehabilitation Center, clients learn to adjust to their vision loss so that they can maintain their independence and enjoy their lives.

“When people see what can be accomplished with an adaptation or by learning a new skill, it can be uplifting and empowering,” said Mary Haroyan, coordinator of volunteer services at the Worcester Vision Rehabilitation Center.

MABVI offers low vision exams at the Worcester Vision Rehabilitation Center, run by Dr. Caroline Toomey-Gitto. Low vision specialists can assess their vision and offer adaptive devices to help them maximize the use of their remaining vision. Last year Dr. Toomey-Gitto gave specialized low vision exams to 164 patients. Clients have also undergone low vision exams through MABVI’s affiliate providers, including Dr. Jane Orenstein in Whitinsville and Dr. Jen Salvo in Wellsley.

Clients have also received vision rehabilitation training from an occupational therapist who visited their homes. One hundred thirty nine patients who underwent low vision exams followed up with an occupational therapy appointment.

Throughout Worcester County, MABVI holds low vision support groups to bring blind and visually impaired individuals together. Our Worcester, Northborough and Leominster Low Vision Support Groups served 34 clients as they experienced vision loss.

“You will never know what a blessing the lighted hand-held magnifier has been to me, especially at church and at the grocery store,” one client writes. “I’m thankful for their visits to our home and their helpful advice in a number of areas—they’ve helped immensely with problems I was unaware could be readily resolved and my mood always improved with the visits.”

Numerous clients have benefited from the 1:1 volunteer services, including children’s book author C.J. Posk. Clients can meet with volunteers who help with grocery shopping, drive them to medical appointments, read mail and labels, write checks and more.

The low vision support groups at Worcester, Northborough and Leominster provide a forum for blind and visually impaired people to come together. We have served 34 individuals at the support groups as they experienced vision loss.

Clients and their volunteers can also enjoy leisure time with events like candlepin bowling, which has been around for than 40 years.

With programs like these, we work to forge a strong community and transform lives. We hope you will consider supporting MABVI through Greater Worcester Gives next on May 6.

Focus on Function: The Low Vision Exam

Optometrist Jen Salvo offers insight into the low vision exam.

This post was written by Dr. Jennifer Salvo, a low vision optometrist. She sees patients for MABVI in Holyoke and Springfield and also provides low vision care in Wellesley Wayland, and Hyannis through her private practice. For more information about Dr. Salvo and her low vision practice, visit www.metrolowvision.com  or call her at 508-740-0706 to schedule an appointment.

If you have impaired vision, and your eye doctor is unable to restore your vision with treatment or surgery, where do you go for help? When your doctor tells you, “There’s nothing more I can do” or “These are the strongest glasses I can give you”, what is your next step?

Many people give up at this point and become increasingly isolated and depressed due to their vision loss. However, there is help available, and your next step should be a low vision exam. A low vision exam is far different than the one you receive when you visit your retina doctor or glaucoma specialist. It is a functional assessment–meaning that the low vision doctor will assess your ability to perform daily tasks, hobbies and activities, and will also address safety concerns.

After performing various vision and reading tests, the low vision doctor will evaluate and prescribe appropriate devices and make recommendations for improving your functioning. The doctor may recommend LED magnifiers, high-powered reading glasses, telescopes, television glasses, or video magnifiers. He or she may also recommend in-home training with an occupational therapist who specializes in working with visually impaired individuals.

Although you may receive a new glasses prescription at the low vision exam, glasses will not restore vision that is lost due to retinal damage or eye disease. However, the low vision doctor can help you maximize the use of your remaining vision.  The low vision exam is the starting point for receiving the services and devices to help you regain independence  and maintain activities you enjoy.

Click here to hear Boston-area low vision optometrist Richard Jamara describe how he helps individuals living with vision loss.​