Living With Vision Loss From Glaucoma

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Please note: This Chat has been edited for clarity and brevity.

MS. KACI BAEZ: Hello, and welcome to today’s BrightFocus Glaucoma Chat. My name is Kaci Baez, Vice President of Integrated Marketing and Communications at BrightFocus Foundation, and I am pleased to be here with you today as we discuss living with vision loss from glaucoma. BrightFocus Glaucoma Chats is a monthly program, in partnership with the American Glaucoma Society, designed to provide people living with glaucoma, and their family and friends, with the support that they so desperately need by the most renowned glaucoma experts in the country.

BrightFocus funds exceptional scientific research worldwide to defeat Alzheimer’s disease, macular degeneration, and glaucoma and provides expert information on these diseases. You can find more information and free resources and publications on our website at www.BrightFocus.org.

Now, I would like to introduce today’s guest moderator, Jullia A. Rosdahl, MD, PhD, who will interview our experts. Dr. Rosdahl is a board-certified and fellowship-trained glaucoma specialist at the Duke Eye Center who is working to preserve sight for her glaucoma patients. As an Associate Professor of Ophthalmology at Duke, she currently serves as the chair of the planning group of the National Eye Health Education Program and the chair of the Patient-Engagement Subcommittee of the Patient Care Committee of the American Glaucoma Society. She has authored peer-reviewed articles on health coaching and patient education for glaucoma, as well as numerous chapters, including a textbook on OCT for glaucoma. And she presents regularly across the nation on these topics. Thank you for being here with us today, Dr. Rosdahl.

DR. JULLIA ROSDAHL: Thank you so much, Kaci. It is a pleasure to be here. I’m so excited about the conversation that we’ll have today. We have two experts to discuss the topic of vision rehabilitation. First, I’d like to introduce occupational therapist Omar Mohiuddin. Omar has worked in both clinical and nonprofit eye care settings, as well as academia, doing research in the field of preventive medicine. And he currently works here at the Duke Eye Center—I get to work with him, it’s such a pleasure—in our Vision Rehabilitation and Performance Division, where he sees clients with age-related and acute onset vision impairment, and addresses how changes in vision affect participation in activities of daily living, including community and work accessibility, functional mobility, and driving safety.

We also have Ed Haines, who is the Chief Program Officer at Hadley, which is a 100-year-old organization dedicated to providing free programming that helps older adults discover new ways to do things made difficult by vision loss. I love Hadley. I’m so excited that Ed is here with us. He is a certified vision rehabilitation therapist and has served adults with visual impairments for 25 years, both in the public and private sectors. So, welcome, Omar and Ed, to the conversation.

MR. OMAR MOHIUDDIN: Thank you, Dr. Rosdahl.

MR. ED HAINES: Thank you, Dr. Rosdahl. It’s a pleasure to be here.

DR. JULLIA ROSDAHL: Wonderful. So, Omar, I’d love for you to start us off by explaining what vision rehabilitation is from an occupational therapist perspective.

MR. OMAR MOHIUDDIN: Sure, I would be happy to. So, I would like to start by explaining that vision rehabilitation includes a host of different services that are available to those experiencing visual impairment, such as low-vision optometry, orientational ability, and vocational rehabilitation, just to name a few. And at the core of all of these services or disciplines, they’re really centered on helping those affected by visual impairment to adjust and compensate for changes in their vision; maximize the use of their remaining functional vision, if possible; and teach them ways in which they can maximize their independence and safety. As an occupational therapist, or an OT, my work is more focused on helping those experiencing vision loss—as well as other physical, cognitive sensory issues—complete their daily activities. These activities may include self-care activities, such as identifying and finding food on your plate or picking out an outfit for the day; instrumental activities, like paying your bills or cleaning your home; vocational activities, such as using a computer to complete your work duties or school assignments; leisure activities, such as being able to read a book, playing cards, going golfing, watching television; activities involving social participation, so that may include recognizing and interacting with people in your communities; community-mobility activities, such as driving; and lastly, health management activities, such as being able to manage your medications appropriately or checking your blood sugars.

DR. JULLIA ROSDAHL: Gosh, that is so much. I appreciate all the work that you’re doing. Ed, do you have anything else to add from your perspective as a certified vision rehabilitation therapist?

MR. ED HAINES: Sure, but not much. Omar really covered the bulk of what we address, and as he mentioned, it’s a huge area of work that we do with folks. I just might want to add that vision rehab therapists sometimes actually work with folks in their homes and work with families, so we also may deal with relationships, helping family members cope with vision loss. We work in the community, so we may do workplace assessments at a work site or educational assessments at a school or a university or a place of learning. It really encompasses an awful lot.

DR. JULLIA ROSDAHL: Yeah, and it’s really such important work and makes such a difference for people. Ed, can you tell us what vision support resources are available, especially those through Hadley, and how people can access them?

MR. ED HAINES: Sure. There are lots of resources out there that are both private and public. Thanks for mentioning Hadley; I’ll briefly talk about Hadley first. As you said in your introduction, we’re dedicated to helping adults discover new ways to do things made difficult by vision loss. Hadley provides a wide variety of virtual programming, and that ranges from iPhone tutorials; cooking tips and tricks; Braille; and even community opportunities, like discussion groups and peer supports. Our members are really spread all over the country, even the world, and everything we offer is free. We’d love anyone who’s listening today to give us a call. We’d love to help you. Our number is (800) 3234238, or you can go to our website, hadleyhelps.org.

Now, in the United States at least, there are many other organizations that provide help on a local level. And these can include not-for-profits, occupational therapists working in clinical settings with eye physicians, the National Library Service for the Blind and [Print Disabled], or state agencies for the blind and visually impaired. In the United States, at least, these services are kind of fragmented. They’re pretty local, and each area of the country has varying degrees of access to these entities. Sometimes, particularly in rural areas, they are unfortunately a little hard to find. Also, many of these organizations have eligibility requirements, as well, that are all different state by state. So, if anyone is listening and is interested in a local agency that can help, Hadley’s happy to help you do that, as well. Just give us a call. We have a help desk team that has access to databases of local resources, and we’d be happy to assist anyone to identify a local resource near them.

DR. JULLIA ROSDAHL: Thank you, and I just want to amplify how great Hadley is for patients. I’m always so impressed by the things that I learn when I go to your website, and I know how wonderful it is to have a phone number to call to get help when you need it. Thanks for sharing those resources with our listeners. Omar, can you tell us how individuals can access vision rehabilitation with an occupational therapist, and if you need a referral for that?

MR. OMAR MOHIUDDIN: That’s a great question. More and more OTs who specialize in low vision rehabilitation may be employed in nonprofit and community settings. By and large, the majority of occupational therapists, like Ed had mentioned, work within medical institutions that provide outpatient or home-based care, where insurance is being billed for their services. OT services are usually covered by most third-party payers, like Medicare, and most of them will require a referral from a medical provider, and sometimes even prior authorizations, in order to pay for those services.

DR. JULLIA ROSDAHL: That’s really helpful. Where are these services located?

MR. OMAR MOHIUDDIN: So, it’ll depend, right? If you are seeking vision rehabilitation services, it’s best to start by asking your glaucoma provider first for a referral to a low vision specialist in your area. Now, these specialists may include a low vision optometrist who would complete a functional vision evaluation; prescribe glasses or devices, such as assistive technologies; and then refer you to OTs, or occupational therapists, that they’re aware of in their area who have specialized training and knowledge in the field of vision impairment and rehabilitation.

DR. JULLIA ROSDAHL: Yeah, I feel so lucky at Duke to have you and our team here, and I know that there are teams like that around the country helping people. Sometimes we don’t recognize vision loss in one of our eyes when it’s kind of doing double work to make up for the vision in the other. One of the questions that we had was about this, Omar, can you tell us more about what functional vision loss is and who would be a candidate for vision rehabilitation services?

MR. OMAR MOHIUDDIN: Certainly. I think it’s really important that we make a few distinctions here with the terminology that we use, because not all persons with a diagnosis of glaucoma may have vision loss, and not all persons with changes in their vision may be having issues carrying out daily activities. The three key terms that I’m going to use here are disorder, impairment, and functional vision loss. So, glaucoma is a disorder describing a group of eye diseases that may cause damage to the optic nerve if left untreated. This disorder and the resulting damage may cause you to experience symptoms, which is what we call an impairment. Common impairments that persons with glaucoma may experience may include blurred vision, loss of peripheral vision, decreased color and contrast sensitivity, increased sensitivity to glare and bright lights, and difficulty seeing in dark or low-light conditions, just to kind of name a few. Now, when these symptoms or impairments get in the way of someone completing functional activities, such as reading or driving, because their vision is too blurry in order to make out the words in their book or their color vision is too impacted to where they have difficulty identifying traffic light colors appropriately or identify road signs appropriately, this is what we call functional visual loss, as it takes away from your ability to complete functional tasks. I like to think about functional vision as the vision that’s required to do a functional task, and so anyone experiencing functional vision loss would be good candidates and may benefit from vision rehabilitation services.

DR. JULLIA ROSDAHL: That is so useful. I appreciate how careful you were explaining those terms. I think that’s so helpful for people to have kind of a common language to talk about things. And as a follow-up to that last question, Ed, I wonder if you could discuss some of the common, practical daily living tasks that are affected by the different functional visual deficits.

MR. ED HAINES: Sure, that’s a great question, too. I could give you a really, really long answer that could take up a lot of this time, but I’ll try to condense my answer as much as I can. Daily living tasks are affected … they’re really as varied as individuals themselves. They affect individuals in many different ways. A lot depends on the level of vision loss, the time since diagnosis, living conditions, even family environments and relationships. There are some common tasks that seem to come up for folks pretty often. And the first has to do with reading print. This means that if reading print is difficult, people may have difficulty reading mail, the newspaper, pill bottles, restaurant menus, signages in stores, or even printed handouts at houses of worship. People with typical vision, we take for granted how often in any given day that print is used to go about daily lives. And of course, difficulty reading print then can translate into difficulty using technology, like computers or smart phones. We depend on these more and more. We use them to pay bills, text family, call a ride, etc.—the list goes on and on. The second category relates to just general problems with safely traveling in our homes or communities. I think Omar’s going to talk about the issue of driving very shortly, but with certain types of vision loss—the loss of sight or peripheral vision that sometimes happens with glaucoma, for instance—it can become hard to see the basement stairs or curbs or obstacles on the sidewalk or hard to walk in crowded places or just more difficult to get around in the dark without tripping over things.

Now, there are lots of skills that you can learn to get around these issues, but you have to learn them, and you have to find the right expert to teach them to you. And then, finally, there’s just the general daily things we do every day just to take care of ourselves, from cooking meals to making sure our socks match to shaving or doing our hair, even taking medications. And the thing is, with daily tasks, if vision affects just one … vision loss affects just one or two tasks of daily life, that’s likely not a catastrophe. But once we lose confidence in several areas, we lose more than just the skills themselves. That loss affects other really important parts of our life. And by that I mean, if we’re uncertain about reading a menu, and we don’t like to ask for help, we may stop eating out with friends as often as we used to, or if we feel unsafe walking in crowded places, we may put off going to the store when we need to. If we’re not sure about matching our clothes, we may stop going to social gatherings like we used to. Daily tasks are definitely impacted. There’s a lot of them, but it’s important to understand, too, there’s a ripple effect from this that extends over the whole of a person—how we see ourselves and how we want others to see us—and the bottom line is that vision loss is really a holistic experience; it’s not just task-specific.

DR. JULLIA ROSDAHL: It really is, and how you described it, I think that really helps us kind of get a little glimpse of what people might be going through with this. I really appreciate how careful you were with that answer. And you did touch on driving. I know that we get questions about what skills vision rehabilitation can help with, and I know a big one for my patients is driving. Omar, can you touch on that for us?

MR. OMAR MOHIUDDIN: Yes and no. This is a very complex question, as driving is a very dynamic activity that requires more than just having good vision. For those working in the field of vision and eye care, we recognize that one of the greatest impacts that vision loss can have is on someone’s eligibility and ability to drive. Driving is one of those daily activities that allows people access to their community, including going to work, grocery shopping, visiting family and friends, going to church or other houses of worship. And depending on where you live, you may or may not have access to alternative means of accessing your community, such as public transportation. So, to answer your question, I’ll first start by saying that driving eligibility, meaning if you’re legal to drive, is dependent on whether a person meets the criteria set forth by the state that you live in. Every state has their own unique requirements and guidelines for driving, but most all states require that you have a certain level of visual acuity and that you have a certain amount of visual field or your visual field is wide enough in order to drive.

Now, there is a difference between being legal to drive and being comfortable to drive. For those who meet DMV requirements but still do not feel comfortable with the idea or the act of driving due to visual concerns, we may introduce vehicle modifications, such as extra accessory mirrors for your car to make you more aware of your surroundings; instruct you in organized search and scan strategies to find targets while you driving; and for those bothered by glare whether it’s sunlight or bright headlights at nighttime, we may introduce you to special sunglasses or filters. And in some cases, we may refer you to other specialists, like certified driver evaluators for behind-the-wheel evaluations or comprehensive driving evaluations that looks at more than just vision, but assess you for other concerns involved in driving, such as reaction time, physical motor abilities, and then cognitive deficits.

DR. JULLIA ROSDAHL: That is really, really helpful. And we actually had a question from one of our listeners about one of the terms that you used, Omar: bioptic driving. Can you explain that a little bit more?

MR. OMAR MOHIUDDIN: Yes, so that is a great question. Many states do allow for the use of something called a bioptic telescope system. Now, this something that would have to be prescribed by an eye doctor, and a bioptic is essentially … for those who are unfamiliar with this concept, it’s a pair of glasses with a telescope attached to it. It would allow someone to see targets at a distance, but if you’ve ever taken a look through a pair of binoculars or a telescope before, you know you’re not seeing the whole picture, you’re seeing a part of the picture just zoomed in really big. There are some states that may allow this tool to help someone who doesn’t meet the requirements for driving meet the requirements for driving. But there is a process that may involve clinical training, on-road training, different paperwork or forms to be filled out by your eye care provider. It’s hard to answer that question because the laws are so different, but there is an option for some people who would be good candidates in the use of a piece of assistive technology like that.

DR. JULLIA ROSDAHL: Yeah, and I appreciate you talking about kind of the candidates whom it might be good for, because I think—and we might be getting a little bit into the weeds for our listeners, but they might appreciate it—but I think with glaucoma often, a bioptic, a telescope isn’t necessarily going to be helpful because of the type of vision loss that people have; it affects more of their peripheral vision, and so a telescope doesn’t particularly help with that. Has that been your experience?

MR. OMAR MOHIUDDIN: Yes, so not to say that persons with glaucoma are not good candidates for bioptics, but it’s typically designed for people who have difficulty seeing detail at a distance. Now, another thing that we notice with glaucoma is that loss of peripheral vision may cause someone to describe their vision as being more dim, or it’s harder to see in low-light environments, and when you’re looking through a telescope, the image is going to appear dim already, so some folks with glaucoma when looking through a telescope, they may describe the image as not as bright or as helpful as they think it may be. But, again, everyone is different, everyone’s vision loss is going to be different, so to be evaluated for the use of a bioptic it’s going to have to be done on kind of like a one-by-one basis.

DR. JULLIA ROSDAHL: Sure, sure. That makes a lot of sense. We actually have another question from one of our listeners, and I think that this might be great for Ed, based on your experience as a vision rehabilitation therapist, although Omar may be able to weigh in, as well. But the caller notes that: Since glaucoma can be hereditary, how can family members be brought into the rehab process without negatively impacting their feelings on the possibility of facing such a reality in the future? Tough question, but I wonder what your thoughts are, Ed?

MR. ED HAINES: That is a really tough question, and there is no right or wrong answer. But I would encourage family members to be involved with their relatives’ eye care right from the get-go and to attend the physician appointments with their family member, gather information with their family member, and try to be part of the process right away. The more familiar you are with something, the less afraid you are of it. Once you become involved, you get to know what’s going to happen, what’s going on, and I think that can reduce some of the anxiety. Not always, but that might be a place to start.

DR. JULLIA ROSDAHL: Yeah, wonderful. I appreciate that this listener mentioned how glaucoma is hereditary and it can run in families. Certainly, if you have a family member with glaucoma, please get your eyes checked, so if you do have glaucoma, it’s diagnosed early and, hopefully, preventing vision loss. Another question that we see is: Why is it that I can see more sharply when my eyes are dilated? And as an ophthalmologist, I’ll try to touch on this subject. Although a lot of people feel like their vision’s temporarily worse when their pupils are dilated, some people do feel like they can see better when their eyes are dilated because of the size of the pupil and how it can impact vision. A small pupil can sometimes block some of the light, making things a little dimmer, make some of those symptoms—like Omar mentioned earlier—a little bit pronounced, and a larger pupil can let more light in. So, that might be helpful to the person who had that question. I want to move on to legal blindness. Omar, can you explain to us what it means to be legally blind?

MR. OMAR MOHIUDDIN: Sure. Legal blindness is nothing more than an indication that you have met a certain level of vision loss that would qualify a person for benefits, including disability and certain state social services and rehabilitation programs. So, it’s a qualifying criteria. There are two criteria for a person to be considered legally blind, and you only have to meet one of the two. The first would be having a visual acuity of 20/200 or worse in your better seeing eye, and the second criteria is having a visual field that is 20 degrees or less in your better seeing eye. And just a note, legal blindness is nothing more than a label, it does not tell us about what a person can and cannot do, and it is certainly not synonymous with the term blindness.

DR. JULLIA ROSDAHL: So, so true. That’s really helpful. Ed, whether someone’s determined legally blind or not, do you have any advice on how they can explain their vision loss to their employer, to the people that they work with?

MR. ED HAINES: Wow. Well, that’s a good question, and there is no right or wrong answer to this one, either. But I will tell you from experience that the first recommendation I can make is that you should not speak to your employer at all until you’ve done a lot of homework. Because, sadly, you can count on your employer knowing absolutely nothing about vision loss. That’s just the way it is. And, in fact, they may have a bunch of negative impressions about vision loss because that’s just the way vision loss is portrayed in the media. There are some important things that you should be confident about before you talk to employer. And the first is, you’ll need to be able to clearly explain your diagnosis. And this is where your physician can come in and help you do this, help you understand not only what they’re telling you, but then how to repeat that in a way that other folks can understand, as well. So, know what your diagnosis is, and know how to explain it to others. And then, secondly, have your own good idea about what parts of your job may be impacted by that diagnosis. And you may not know all of them, but as you work with vision impairment, you’ll get an idea of what’s hard and what’s not, so have a good idea about what those tasks are. And then, you’ll need to come up with a plan of accommodation for that impact because your employer will not know what to do. You have to come to your employer with solutions. But here’s the good news. You don’t have to come up with this all on your own. Every state has a vocational rehabilitation program with specialists whose sole job it is to help you, as a person with a vision impairment, stay on the job. Now, vocational rehabilitation, Omar touched on it before, it’s another topic really for another discussion. But folks like myself or Omar can help you find a vocational rehabilitation office in your area, and these services are federally mandated, and they’re free. So, use these services to come up with a comprehensive plan. And then finally, before you march in there to your employer, you need to practice what you’re going to say. Work with a friend or someone else, a family member, and rehearse your talk with your employer over and over and again. Do it more than just a few times. When you’re confident, your employer will be confident in your abilities as well.

DR. JULLIA ROSDAHL: That is such a great roadmap that you laid out—so helpful. Omar touched on this before when he talked about what legal blindness was and how it was useful for identifying benefits. Can you talk a little bit more about that, Ed, about what benefits people with vision loss might be eligible for, and would this be like qualifying for a disability?

MR. ED HAINES: It’s hard to give an accurate answer. But, yes, one of the benefits that someone with legal blindness, for instance, would be eligible for is potentially vocational rehabilitation. And that program does a lot more than what I just discussed before. It also sometimes helps pay for educational endeavors, college tuition, retraining, tools, supplies, accommodations that you might need on the job, assistive technology, etc., so definitely get in touch with vocational rehabilitation. Social Security Disability is potentially a benefit when you lose vision. Again, you could get a definitive answer about when that would be possible by contacting your local Social Security office. There are some tax benefits for legal blindness. Again, you’d want to talk to your accountant or someone from the IRS. And different states have a lot of other little benefits you wouldn’t think about—like for some states, for instance, you can get a fishing license at a reduced rate or entrance to national parks at a reduced rate. So, there’s a myriad of benefits. Not all of them are coordinated between states, so if you can find a vision rehab therapist or an occupational therapist, like Omar, who probably has at their fingertips a pretty good knowledge of locally what you’re going to need, that’s your best bet.

DR. JULLIA ROSDAHL: Yeah, it seems like really getting connected with folks locally, as well as taking advantage of the more kind of national-based resources like Hadley, is so important to making things work for yourself. We actually had another question from one of our listeners, and I think that, Omar, I’d love for you to take this question because I’ve heard you talk about this before to us here at Duke at our last glaucoma symposium, actually. And this is about glasses, and I think tinted glasses. So, this listener asks, “Are there any recommendations on glasses to help with depth perception, with vision blur, or fog?” And they’re asking about different tints, and I have heard you speak on this before, and I always find it really helpful. Although I know you can’t really say anything specific, but any guidance that you can offer this listener?

MR. OMAR MOHIUDDIN: Yeah, so when we look at filters, as we call them—instead of sunglasses for glare control—we’re trying to block out glare. And “glare,” you hear this term used all the time, but really all it means is that light is scattering in someone’s eyes, and it’s making things look hazy or cloudy, kind of like a fog that you just can’t seem to cut through. And there’s a lot of different sources of glare, but what we do know is that one of the most strongest contributors to glare is blue light. Blue light tends to scatter more, it tends to cause more glare. A lot of people complain to me every day about the new headlights on especially the newer cars at nighttime being more bothersome. Those new headlights are not brighter, they’re bluer. So, these bluer headlights are longer range; they tend to go further out onto the highway ahead of them. But on the receiving end it looks like their high beams are on, that their brights are on. So, we do recommend blue light–blocking sunglasses, and within these blue light blockers, there’s a myriad of different tints. And it’s really individual for the person in which tint helps them see the best, but what’s typically recommended—and again, you may want to see a low vision optometrist or occupational therapist to get specific recommendations for yourself and have an opportunity to try these tints on and see how they look—kind of the general recommendations are you don’t want to go with the darkest sunglasses, because if you have a hard time seeing at nighttime, you don’t want to simulate nighttime everywhere you go. So, yellow may be a good light tint that allows you to bring in all the good light while still blocking out the bad light causing that glare. A good dark color that’s really popular amongst the glaucoma patient population is what we call plum or boysenberry. It’s kind of like a purple color in nature, and I know, Dr. Rosdahl, you’ve heard me joke about this, but when you see Whoopi Goldberg and Elton John and that guy Bono from U2 wearing purple sunglasses, they all have something in common with every caller listening in today, and that is that all those three celebrities, they have glaucoma. So, it’s not a fashion statement, but something that they’re using for glare control. But like I said, everything is individual to the person, but those are the kind of criteria that we tend to work within when recommending filters.

DR. JULLIA ROSDAHL: Wonderful. Well, I have so enjoyed this conversation, I have learned a lot, and I think I just have one more question that I’m going to send to Ed before we work on closing this out. There are just so many wonderful low vision advocate organizations, as well as individual advocates. So, Ed, what’s the best way for people to connect with these groups and with these individual advocates?

MR. ED HAINES: It’s a good question because there are lots of groups, both local and national. I’ll mention the American Council of the Blind and the National Federation of the Blind—those are advocacy organizations. They have chapters all over the country, local in counties and states. There are lots of other smaller support group systems, and then Hadley has a peer-to-peer program, where we can match you with a peer who’s experiencing the same type of vision loss you are. What I will say about all of these is that getting in contact with other folks who are experiencing the same thing is just as an important component of adjusting to vision loss as is the help that Omar and I can give you. There’s something so meaningful about being able to talk about your vision impairment with someone who understands, who’s going through the same thing. So, I really encourage folks to try to find a support group. And there are virtual support groups, and Hadley offers discussion groups. Well Connected is another resource. Then there’s The Glaucoma Community, from Prevent Blindness—that’s a terrific resource, as well. So, there’s a lot out there; I really encourage folks to try to engage with others.

DR. JULLIA ROSDAHL: Wonderful. Again, thank you so much, Omar and Ed, for this fantastic conversation. I’m going to send our virtual microphone back to Kaci to close us out.

MS. KACI BAEZ: Thank you so much, Dr. Rosdahl, Omar, and Ed, for the important information that you shared with us today. And this concludes today’s BrightFocus Glaucoma Chat.