Why Not?

Post by P. Nina Livingstone

Nina Livingstone

Nina Livingstone

Growing up, I always enjoyed my sighted life; I saw blue skies, the exquisite ocean and its waves embracing their shores, the colors of the seasons in New England and the colors of my socks, the expressions of others in all conversations… bliss! Now all the visuals, the beauty of nature, people, animals, the earth with its fields and farms, the flowing rivers and printed New York Times, magazines and books – everything remains dormant in my mind’s vault. Everything around me relies on memory, the reels of “film footage” from the past. I lost my sight completely in the year 2000 from a hereditary eye disease, retinitis pigmentosa (RP).

Adjusting to the world sight-lessly entails time and patience – both of which I find irritating, because time is precious and short, and patience – well, I have little patience. Perhaps I am infinitely in denial about my sight loss. My door remains open to the possibility of seeing again – why not? Continue reading

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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

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

A stuffed snowman wearing a winter hat sits on a table at the Natick support group meetingOnce 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.” Continue reading

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 the low vision doctors who attended the MABVI Affiliated Low Vision Providers meeting

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 Dr.Salvo's father in law using a bioptic telescope

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

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.

How to Make the Holiday Season Brighter for Visually Impaired Relatives

This time of year, many family members and caregivers are facing concerns about how to make sure the holidays are a problem-free and joyous time for their visually impaired and blind relatives. Here are some tips to keep in mind this season to ensure the holidays are brighter for your visually impaired relative or loved one:

When decorating for the holidays, do not reorganize major items. Visually impaired adults rely on their knowledge of a home’s layout in order to navigate rooms and avoid bumping into walls or furniture, or falling down stairs. While hanging up lights and other holiday decorations, avoid rearranging furniture, belongings and other common household items. Consistency is vital for someone with vision loss. Moving things, especially necessary items such as medications and canes, can confuse and distress a visually impaired individual.

Opt for safe alternatives to decorations that can become dangerous. Candles, for example, can cause fires if the table they are on is accidently bumped by someone who is unable to see it clearly. Choose battery-powered candles instead, or set candle holders in a dish of water, just in case.

Use contrasting colors on and around the dinner table when planning your big holiday meal. For those with limited vision, items tend to blur into one another. If the floor in the dining room is a light color, a dark tablecloth will help distinguish the table from the floor and the walls so that the low vision individual will not bump into the table. To make it easier to eat, use dark colored dishes when serving light colored food and vice versa.

Photo Courtesy of Stock Exchange.

Choose and wrap holiday gifts with vision impairment in mind. Consider gifts that can help him or her live life more easily, such as products with larger-than-normal features and audio capabilities. Examples of gifts include large print playing cards, jumbo remote controls, a large analog clock, iPads or Kindle Readers, and audio books. Use gift bags instead of wrapping paper and ribbon, which can be difficult for low-vision adults to maneuver.

A MABVI large-print calendar would make a great gift for the holidays!

Narrate your holiday gatherings and parties. Be sure to verbally introduce yourself when you walk into a room or join a group conversation, as it is often difficult for a visually impaired individuals to recognize people by their voices, especially in a large group setting. When speaking, make an effort to be verbally descriptive and avoid pointing to things in the room with phrases like “over there” or “this way.” Describe gifts that are being opened and suggest that they might be passed around to ensure the low-vision family member feels a part of the ceremony.

Empower everyone to participate. For low-vision relatives, it’s incredibly frustrating not to be able to be as active during holiday celebrations as their sighted loved ones. Too often the visually impaired person is guided to the living room while everyone else gathers in the kitchen to work. Instead, give him or her a job – like folding napkins or drying dishes – so he or she can feel part of the group.

People gathered around a table

During the holidays and always, be supportive. Patience is key. Offer advice and resources without being overbearing. Actively listen to what the individual needs. If necessary, consult resources, like the Massachusetts Association for the Blind and Visually Impaired, who can connect you and your family with medical professionals that help visually impaired and blind adults live with confidence and dignity in their own homes.

Happy holidays from the Massachusetts Association for the Blind and Visually Impaired!

Exploring vision rehabilitation with Dr. Jamara

Dr. Jamara (left) receives an award for his dedication to patients with vision loss. Pictured with Dr. Jen Salvo and a MABVI low vision patient.

Dr. Jamara (left) receives an award for his dedication to patients with vision loss. Pictured with Dr. Jen Salvo and a MABVI low vision patient.

MABVI sat down with Richard Jamara, a doctor of optometry and professor at the New England College of Optometry. He is also the attending low vision specialist at the New England Eye in Boston. Here are some highlights of the interview. Read the full interview here. Continue reading