How to Remain Independent Despite Low Vision
This telephone discussion features Orli Weisser-Pike, a doctor of occupational therapy and a certified low vision therapist. She has over eighteen years of clinical experience in a wide variety of settings and has for the past decade specialized in treating people disabled by vision loss.
“How To Remain Independent Despite Low Vision”
Transcript of Teleconference
May 28, 2014
1:00 p.m. – 2:00 p.m. EST
GUY EAKIN: Hello, everyone, and welcome to our monthly BrightFocus chat presented by the BrightFocus Foundation. My name is Guy Eakin. I’m a Ph.D. and also the Vice President of Scientific Affairs at the BrightFocus Foundation. Today we are going to talk about living independently with low vision. So, unlike previous calls, no drugs, no needles—what can we do in our daily lives with just a little bit of help and training?
Like last time, if you would like to submit a question at any time during today’s call, please press *3 to submit your question to an operator. And if for some reason you are disconnected from the call, here is the number to call back in. It’s 877–229–8493. You’ll then be asked to punch in an ID code, and that ID code is 112435. So that’s 877–229–8493, ID 112435. All our calls are recorded and we will give you more information on recordings and transcripts later in the call.
Our guest today is Dr. Orli Weisser-Pike, a doctor of occupational therapy and a certified low vision therapist. She has more than 18 years of clinical experience in a wide variety of settings and has specialized in treating people disabled by vision loss. Dr. Weisser-Pike is the 2014 recipient of the Recognition of Achievement Award given by the American Occupational Therapy Association. She is currently Assistant Director of Low Vision Services at the University of Tennessee where she also serves as a professor in the Department of Occupational Therapy.
Dr. Weisser-Pike, thank you for joining us. I’ve had the opportunity to speak with you previously and I have to say, you have a lovely accent. I imagine that our listeners will be trying to pin it down. Am I correct that this is a South African accent? Maybe with a bit of local Tennessee flavor?
ORLI WEISSER-PIKE: You’re right, Guy. Well; good day to everyone and thank you for joining us today. Guy you’re correct. I was born in South Africa and I moved to the United States 18 years ago for my first job as an Occupational Therapist, but I promise I will speak slowly and clearly so hopefully people will understand what I’m saying.
GUY EAKIN: That sounds absolutely great. So, without any further ado—You started to tell us a little bit about yourself and a little bit about your practice, but maybe you can expound on that and tell us about the type of patients you see and what you try to achieve with those patients.
ORLI WEISSER-PIKE: I am an occupational therapist and a low vision therapist. My role is to help develop relationships between people with low vision and their doctor. I also try and make sure that patients have the appropriate types of devices that they need, that are prescribed by their eye doctor, and I try and help my patients learn the skills that they need to use their devices. I make recommendations for patients to help them to adjust their environment, modify their environment. Maybe they need to modify their routine. I try to help patients understand the disease that they have and also dispel some common myths about vision and blindness. I also—a thing that is very important for me—is to help caregivers as well, understand vision loss of their loved ones. So the patients that I see in the clinic range in age actually, from children all the way to, I’ve had centenarians in the clinic.
Most of the people that I see have low vision as a result of an age-related eye disease. Some that come to mind would be macular degeneration, glaucoma, diabetic retinopathy, cataracts, and sometimes retinal occlusions—so, little mini strokes in the eye. Some patients have had a stroke and they’ve had vision loss from the stroke.
As I mentioned, I also do see children. Our university has an affiliation with St. Jude Children’s Research Hospital which is headquartered over here in Memphis, Tennessee. It’s a cancer hospital. Our eye doctors provide the eye care for those children and I do get to see children who have vision loss as a result of the cancer, or sometimes a result of the treatment of their cancer. But in the majority of the cases are senior with age-related eye diseases
GUY EAKIN: What unites everything together there is that loss of vision. Certainly you are at the frontline and in this really amazing place to really understand what vision loss is. Because you are helping people work within their daily lives, not just as a drug, but within their daily lives to understand how to cope with this. I guess the first question we have is how does macular degeneration—that’s what the focus is of our foundation—how does macular degeneration first announce itself? And what I mean by that is: What am I apt to be doing when I first realize that I am losing vision? Will I have difficulty reading? Will bathroom tiles move? Will they blur? So, what can you tell us about when you first notice macular degeneration?
ORLI WEISSER-PIKE: So the number-one reason that people go to see their eye doctor is because they have trouble reading. Most often people want a stronger prescription, they want a new pair of glasses. People will notice that words look blurry, or words run together, and sometimes the print might look faded. It becomes especially difficult when there’s not enough light for reading or when the words are printed on a colored background. So, people might notice that their reading has slowed down a great deal and that they have to sound out words or that they have to go back and look at words again and only when they look back, they see what they’ve actually missed. It can be very frustrating.
I’m glad you brought up the examples of the bathroom tiles moving. What you are referring to is a phenomenon called metamorphopsia. Some people describe the window blinds being wavy or lines of print looking wavy rather than straight, and this is an early sign that there are changes in the retina. So metamorphopsia, what I’m busy describing, is most noticeable when a person closes one eye and looks with the other eye only. But, unfortunately, people don’t go around looking at things with one eye at a time; we use both of our eyes. Our brain does a very good job covering up metamorphopsia when we use both of our eyes together.
I’d like to take this opportunity and make an important announcement to anyone on the call today who has been given an Amsler Grid by their eye doctor. Now, you may not know what an Amsler Grid is, or you may not know that it’s called an Amsler Grid, but an Amsler Grid is a test of your own vision. It is a grid of approximately 3x3 inches square, usually black lines against a white background, with a dot in the center. The instructions are to look at the centered dot and notice if the lines look wavy, or blurred, or distorted, or if there are any areas that are missing from the grid. Now, I want to remind the listeners that you must do this test with each eye separately while the other eye is closed. This test is a way to tell if you are experiencing metamorphopsia or other changes in your vision. If you notice changes you must let your eye doctor know.
GUY EAKIN: Well, I want to take a moment to say that those Amsler Grids that you mentioned are certainly available through BrightFocus.org or by giving us a call at 1–800–437–2423. We will send those right out to you. I also want to take a moment to remind you that if you have questions at any point during this conversation just press *3 and you will be taken out of the call, taken to an operator, who will take down your question and then you’ll be returned to the call.
As you begin to describe the early stages of macular degeneration, when should people come see you? Maybe you can give us a real-world example of what’s a point where you can say, “You know, it’s time to come in and see a specialist.”
ORLI WEISSER-PIKE: Okay, well that’s a very good question. Certainly, if you’ve been told by your doctor that your vision cannot be corrected to normal by eye glasses, or medications, or surgery, and if you have an eye disease or a condition that is affecting your vision, or if you have been told that you have low vision, then you are ready to see a low vision therapist or another rehabilitation professional that works with people with vision loss. Even if your eye doctor tells you there is nothing more that he or she can do for you, or if there is no treatment for your vision problem, then you can always seek help from a vision rehabilitation professional.
Also, if you purchased any optical devices like magnifiers and telescopes, you will need to learn how to properly use them for the right job. I often see patients who have magnifiers that end up in a drawer because they were never taught how to use them correctly. This creates a dangerous cycle of despair because patients then believe that nothing is going to help them, which is not true. So no matter how small or how great your vision loss is, I want to let you know that there is hope and there is more that can be done to help you as a person.
A rehabilitation professional, like an occupational therapist or a low vision therapist, will not be able to restore your vision. But, we will be able to help you function using new tools, and new methods, and new resources. The good news is that the field of low vision therapy is expanding. As more knowledge and education is becoming available, especially in occupational therapy, there are more services that are available as well.
GUY EAKIN: You bring up a couple different professions. I think we will have to come back and maybe talk about some of the differences between the different types of therapists one could see. There is a question that comes up time and time again with our audiences and before we move on to the actual question-and-answer period, I have one burning question. You have a difficult job. You have strong and independent patients, who are facing some very difficult questions. One of the ones that comes up all of the time is driving. As a professional, how do you help people think about that question but still do what’s right and protect their independence?
ORLI WEISSER-PIKE: I’m really happy that you brought up this topic of driving. It is very difficult to talk about driving cessation. It is a complicated issue because many of my patients live in suburban and rural areas where there are no alternatives or options for public transportation or even taxi cab services. Regardless of my personal feelings or opinions about it, I am obligated to inform my patients of the law. So, the vision requirements to obtain and renew a driver’s license vary from state to state, but the common factor in all states is a minimum best corrected visual acuity, meaning the minimum sharpness of vision between 20/40 and 20/60 depending on the state.
Now some states also have a visual field requirement, meaning that when looking straight ahead, one sees so much to each side. Some states allow people to use a specialized telescope for driving called a bioptic telescope, but not all states allow this device. For example, the states of Tennessee and Mississippi allow people to use bioptic telescopes for driving; but the state of Florida, for example, does not allow these devices. And even with the bioptic telescopes, there are certain requirements that must be met. These again vary from state to state.
Now, I want to emphasize that bioptic telescopes are specialized telescopes that are fitted to the patient by an eye doctor. So they are custom-made for each patient. They are not for everyone or for every eye condition. Please don’t try to drive with a telescope even if it is allowed in your state, unless you have been prescribed, fitted, and trained in the use of a bioptic telescope for driving.
So there are several places where you can find out about the visual requirements of driving. A very good website is PreventBlindness.org, and it has on its website a webpage called State Vision Screening and Standards for License to Drive. That is a comprehensive document that lists state-by-state what the requirements are for driving. The National Highway Transportation and Safety Administration also lists on its website state licensing requirements and reporting laws. In some states physicians are required to report patients who do not meet the legal requirements to drive.
GUY EAKIN: I thank you for that and certainly if anybody who does not routinely go onto the Internet would like to call into the BrightFocus Foundation and have somebody help walk them through some of those resources, then that’s what we are here to do. The number is 1–800–437–2423. We are going to move from that particularly sensitive question onto others that are equally important that are going to be submitted by our callers.
I would like to take this time to remind people that if you want to submit a question, just dial *3 and it will take you to that operator who will take that question down. We will try to answer as many questions as we can that are representative of callers’ interests on the topic. After the chat, you can call that BrightFocus telephone number or visit our website at BrightFocus.org to see how these questions have been answered, also to get large font transcripts and download recordings of this phone call.
One of the first questions that we have really tails on the fact that you gave a really nice description of what signals might prompt us to say come see a low vision specialist. We have questions from listeners. Maurice from Connecticut was one of the ones asking, that asked about that term low vision itself. She asked “how low is low vision.” What is a good definition for low vision? Should we get confused when we hear terms like legal blindness or that dreaded word blindness used interchangeably with low vision?
ORLI WEISSER-PIKE: Yeah, sometimes those definitions are confusing. So the basic definition of low vision is vision that is not correctable by surgery, medication, or glasses—meaning not correctable to normal. When we talk about low vision we really rely on two visual functions and that is the sharpness of vision, otherwise known as visual acuity, and the visual field, which is how much you see all around you while you are looking straight ahead. So, sometimes people will call that peripheral vision. The start of low vision is when somebody’s sharpness of vision is 20/60, or worse, and if somebody has visual field defects in both eyes. That kind of gives you an understanding of where low vision starts. We have normal vision, which is 20/20 vision, near-normal, which is 20/30 to 20/40, and low vision starts at the point where functionally people can’t read newsprint. The size of newsprint, more or less, is at the level of 20/50 visual acuity. Again, as I mentioned with visual field defects if somebody has areas of missing vision, islands of missing vision, or complete areas of side vision that are missing, or tunnel vision, these defects in both eyes, that again meets the definition of low vision.
Now, legal blindness is a legal definition and it’s a severe level of low vision which starts at 2200 or worse and also if somebody has a visual field that is smaller or narrower than 20 degrees, they are also considered to be legally blind. The definition of blindness—blindness is less well defined, but blindness does not mean a complete absence of light. In fact, when we talk about blindness, it includes people with low vision as well.
People that are completely without sight represent a very small percentage of the population of people who have vision loss. So, the word blindness can be confusing and it is even more confusing because a lot of very helpful organizations have the word blind in them: For example, the American Foundation for the Blind, an organization that provides tremendous resources to the public. It is for people with low vision, legal blindness, and total vision loss. It can be confusing, Guy.
GUY EAKIN: Thank you. So with that landscape established with some of the terminology let’s move quickly onto some of the other questions. We have Tom from Rhode Island asking about telescopic glasses. I think very importantly, he is asking what are they but also, how long would it take to be able to use them? How would you address Tom if we were in your clinic?
ORLI WEISSER-PIKE: So I would tell Tom that a telescope is an optical device which is commonly used to magnify things that are far away. Most people might be familiar with binoculars for bird watching, or opera glasses for watching a play. A hunting rifle might have a scope that helps a person aim on the target. These are all examples of telescopes. Some telescopes are designed for use with two eyes, like binoculars, and some telescopes are designed to be used with one eye only, and these are called monoculars—monocular telescopes. Some are designed to be worn, like glasses, some are handheld, and some telescopes are designed to be embedded into a pair of glasses like bioptic telescopes for driving that I mentioned earlier.
There are many skills that need to be learned in order to use a telescope effectively and these all depend on the design of the telescope. For example, if a person uses a monocular telescope for reading signage in a grocery store, he or she will first need to learn how to line-up the telescope with his or her better eye, aim it at the target—or aim it at the sign—and focus the telescope while staying steady.
Now if a person uses a pair of head-worn telescopes, those would be telescopes that fit over your ears like a pair of glass—and people use those to watch television—he or she would need to learn how to focus the glasses as well. Learning to use bioptic telescopes for driving is essential if you are going to use those and get behind the wheel. In any event, if you are using telescopes please, please, never walk while looking through a telescope. You might hurt yourself.
GUY EAKIN: Let me ask a question. We are talking about these low vision specialists and you certainly have a wealth of tools. You have telescopes, you have other devices—but how do I find you in my community? Where would I go to find out where a low vision specialist might be situated?
ORLI WEISSER-PIKE: Oh gosh. So, I would start by asking your eye doctor. In 2007, the American Academy of Ophthalmology developed an initiative called the Smart Science Initiative and it encourages all Ophthalmologists, at the very least, to offer patients with low vision information about local resources. So if you see an optometrist as well, ask him or her about low vision specialists in your area.
You can also contact the Academy for Certification of Vision Rehabilitation and Education Professionals. If you are going online, they are at ACVREP.org. Now this organization certifies three professions. They certify low vision therapists, orientation and mobility specialists, and vision rehabilitation specialists. There are about 300 certified Low Vision Therapists in the United States.
You can also contact the American Occupational Therapy Association. There are currently about 40, four-zero, occupational therapists with specialty certifications in low vision.
GUY EAKIN: We also offer through our website a low vision support group fact sheet. We would certainly be happy to help you with that. We are starting to hear a lot of terms. I can only imagine that we have people with one hand on the telephone and one hand on pen and paper. So, let us do the pen-and-paper part. Just call in, give us a couple of weeks, and we will have a transcript available for you. I’m going to ask a question that has a lot of alphabet soup associated with it. Is there a particular degree for all of these professions that you mention, is there a particular sequence of letters that we should see after someone’s name that would let us know we are in the right office?
ORLI WEISSER-PIKE: Oh my! That really is an alphabet soup, Guy! So please bear with me. There are four acronyms that indicate that a person has specialized knowledge and skills in low vision. A CLVT is a Certified Low Vision Therapist. A CVRT is a Certified Vision Rehabilitation Therapist. A COMS is a Certified Orientation and Mobility Specialist. And the last one is a SCLV. Now, that is Specialty Certification in Low Vision. This last one, the SCLV, is only given to an occupational therapist, but an occupational therapist may also have any of the certifications mentioned previously.
GUY EAKIN: I’m going to change courses a little bit. We have had a number of questions that are asking, outside of those devices, what are the things that people can adapt their homes to do, to improve safety, and make some of those tasks in the home easier to perform?
ORLI WEISSER-PIKE: Okay, that is a great question about how you can adapt your home. The first thing you can do really easily is to improve the lighting in your home. Did you know, Guy, that light bulbs lose their brightness over time? Light bulbs lose their brightness, and dirty light covers also take away some of the brightness of the bulbs. Cleaning the fixtures and replacing old bulbs with newer energy-efficient bulbs can make a big difference. Of course, lighting is personal and it is subjective, and what works for one person may not work for another person.
In my practice, a common type of light bulb that many of my patients like—especially in overhead ceiling fans and in places like cupboards, pantries and the laundry room—is a compact florescent bulb that is equivalent to 100 watts and is the daylight color temperature, not soft white or bright white. I would not recommend traditional incandescent bulbs or halogen bulbs because they produce a lot of heat and they are unsafe.
Never, ever place a bulb that has a higher wattage than the fixture it is rated for. This is extremely dangerous and can cause your house to burn down. In fact, I have treated a patient who not only lost his house, but lost family members, as a result of a house fire where there were bulbs that were placed in fixtures that weren’t rated for their wattage. It is a terrible thing to do. Another thing you can do to make your home safer is to remove any loose rugs or secure them to the floor. Clutter, in general, can make it very difficult to find what you need, but even more so when a person has low vision. Try to organize items and keep similar items grouped together. For example, place your cleaning materials in a caddy or a bucket. Keep things in the same place, and certainly do not be afraid to get rid of things that you are not using. So try and clean up some of the clutter.
Another recommendation is to make sure that kitchen cabinets are always kept closed. One sure way to injure yourself is by leaving a kitchen cabinet open and then bumping into it with your forehead. I’ve seen those kinds of accidents and they’re not very pretty. You can also store things according to how frequently you use them. Put plates and cups in cabinets that are easy to reach. Put items that you rarely use, for example a punch bowl, in cabinets that are lower or higher.
One last recommendation: I always recommend keeping a tray on the counter. You could pour your coffee or orange juice, or any other beverage in a cup that is placed on the tray, and that way, if you have an accidental spill it will be contained in the tray and hopefully won’t mess up the kitchen floor.
GUY EAKIN: Those are wonderful. I think some of those are ones that we haven’t really heard about before. For anyone who goes onto the internet and looks for these, my experience is you see a lot of the same sorts of tips. One of the things that I think the low vision specialist profession is offering is that relationship. These are people who have sort of seen and heard it all in terms of techniques for around the home. I really encourage people to take advantage of these low vision specialists.
One of the things that I personally hadn’t heard before—I had a friend tell me the other day—and Kathy, if you are on the line I am talking about you—she said she puts a sticker on her sliding glass door and that’s because she can’t tell the difference between a clean door and an open door. It’s one of those things that make sense, but it really just takes talking to someone who has been down that road to know that that’s one that is worth doing. Those are unexpected things for dealing with low vision, but you probably have some experience with symptoms that might be unexpected or aspects of low vision, in general, that people didn’t realize they would have to accommodate. Could you tell people what types of experiences they might be surprised to find themselves confronted with?
ORLI WEISSER-PIKE: Ah, I think Guy that you might be asking me about Charles Bonnet Syndrome (CBS) is that right?
GUY EAKIN: Well, that would be one of them; sure.
ORLI WEISSER-PIKE: I’m really glad you asked me to talk about this Charles Bonnet Syndrome. Some people may have never heard of it, but it happens to many people with vision loss. Some studies estimate that between one-and-two thirds of people with low vision have it. Charles Bonnet Syndrome is characterized by visual hallucinations, which are also called phantom visions. People with Charles Bonnet Syndrome see things that are not there. These visual hallucinations can take many forms, like patterns, people, animals, bird, buildings, comic book and fantasy characters, and anything else imaginable.
Charles Bonnet was a Swiss naturalist and philosopher who lived in the 1700s. He was the first person to describe the syndrome, after his father, who had cataracts, told his son about the visions that he was having. Charles Bonnet Syndrome can be very frightening or worrisome for someone with vision loss, especially if he or she has not been informed of the possibility of experiencing visual hallucinations. Many patients tell me that they feel very relieved to learn about Charles Bonnet Syndrome because often they think they are losing their minds to Alzheimer’s disease and are afraid to tell anyone about it. The visual hallucinations in Charles Bonnet Syndrome have very specific characteristics. Usually the person becomes aware that the hallucinations are not real, even though they may be very vivid and clear. In fact, sometimes the hallucinations are sharper, more colorful, and clearer than the person’s typical vision with low vision.
Another distinguishing feature of Charles Bonnet Syndrome is the hallucinations are only visual and they do not interact with you, meaning that you do not hear them, you don’t smell or feel things that aren’t there. The hallucinations can appear at any time of day. Sometimes, they fit with the background of what you are seeing, which gives them an understandable feeling of being real. Sometimes, they may interfere with what you are trying to see; and they can last for a short period of time, like a few minutes, or they may last longer.
There is no medical cure for Charles Bonnet Syndrome. Some people find a way of getting rid of the hallucinations by changing what they are doing. Some people find that if they move their eyes from side-to-side, the hallucinations will dissipate. Some people find that brighter light lessens hallucinations. There is no single technique or cure for getting rid of these hallucinations. The good news is they do tend to lessen overtime and people do adjust to having them.
There are some great resources for learning more about Charles Bonnet Syndrome and, again, I am going to recommend some websites. One is VisionAware.org and LightHouse.org both have great Web pages about Charles Bonnet Syndrome. Also, the British website RNIB.org, that’s the Royal National Institute of Blind People in England, also has very good information about Charles Bonnet Syndrome.
GUY EAKIN: We don’t have terribly much time but I do want to try to hit one more question. We had a question show up that was kind of interesting. I’ve been trying to take a lot of questions and summarize them, but this one was a little bit unique. This was a man named Russ from Illinois, I think, and he asked “If someone has poor vision in only one eye, how can visual confusion be minimized?” How do you keep the good eye and the bad eye from tricking each other? Is that something that a low vision specialist can help with?
ORLI WEISSER-PIKE: That is a very good question and something that usually happens when people are used to sighting with one eye. So, there is something called eye dominance. Just like we have a hand that we use to write with, which is our dominant hand, we also have an eye that we typically use to sight with. When somebody loses vision out of that eye that can make it difficult to adapt to that. It is usually easier if the difference between the two eyes is very great. If the difference is small then it might be even more so.
One thing that I would recommend, for example if there is difficulty reading, I would take a piece of clear tape and just put it over the lens of the glasses of the side of the dominant eye—the eye with poorer vision—just as a temporary occlusion, something to obscure the vision out of that eye so the person is only looking with the better-seeing eye for the task that they are trying to do—for example, reading. That is usually a task that people have difficulty with.
When it comes to using optical devices, again, it would be most beneficial if you see a therapist and learn to line the devices up with the better eye. Sometimes people want to still use the dominant eye, even though it is the poorer-seeing eye and they don’t get good, reliable, visual information through that eye. So again, working with a low vision therapist can really help to minimize the visual confusion.
GUY EAKIN: Thank you so much, and we’re coming to the end of the period we have set aside for our call. I really want to take a moment to thank you so much and express appreciation to Dr. Weisser-Pike for taking the time to speak with us today and certainly thank everyone who joined the call and submitted a question. As I mentioned earlier, we will be posting a recording and a large font transcript of the call on our website. You can also get to that by just calling us at 1–800–437–2423
You can also listen to and download past chats on Apple iTunes and SoundCloud. Best of all, this is all free of charge. You can get to those prior calls. Give us a week or two, and we will get this one up there as well.
Our next chat will be next month and it will be on Detecting the Early Signs of Macular Degeneration. It will be Wednesday, June 25th, at 1 p.m. EST, 10 a.m. PST. We certainly encourage you to register and submit questions in advance, and we will be sending you a reminder email if you have already registered on this call. In fact, you can register for the June chat right now, and you can also request free low vision materials like our safety brochure, Safety and the Low Vision Driver or the Amsler Grid that I mentioned earlier in the call. Again you can do that by calling 1–800–437–2423 or by visiting our website at BrightFocus.org. Again, that’s 1–800–437–2423 or BrightFocus.org
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Amsler Grid – A grid of horizontal and vertical lines used to monitor a person's central visual field
Charles Bonnet Syndrome – The experience of complex visual hallucinations in a person with partial or severe blindness
COMS – Certified Orientation and Mobility Specialist
CVRT – Certified Vision Rehabilitation Therapist
Metamorphopsia – A defect of vision in which objects appear to be distorted; usually due to a defect in the retina
SCLV – Specialty Certification in Low Vision
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