Robert W. Massof, PhD
The telephone discussion features Robert W. Massof, PhD, who is Professor of Ophthalmology and Neuroscience at the Johns Hopkins University School of Medicine and Director of the Lions Vision Research and Rehabilitation Center and the Johns Hopkins Wilmer Eye Institute, and Jim Deremeik, RT, CLVT, who is the LOVRNET Project Manager and the Education/Rehabilitation Program Manager for the Lions Vision Research and Rehabilitation Center at the Johns Hopkins Wilmer Eye Institute.
“Low-Vision Therapy: What You Should Know”
Transcript of Teleconference with Robert W. Massof, Ph.D., and Jim Deremeik, RT, CLVT
April 29, 2015
1:00 – 2:00 p.m. EDT
Please note: BrightFocus Chats may be edited for clarity and brevity.
GUY EAKIN: Hello, everyone, and welcome to our monthly BrightFocus Chat, presented by the BrightFocus Foundation (BFF). My name is Guy Eakin; I’m the Vice President of Scientific Affairs at here at BrightFocus.
Today we are delighted to talk with Jim Deremeik, the Education and Rehabilitation Program Manager at the Wilmer Eye Institute at Johns Hopkins University, at the medical school, and Bob Massof, a Professor of Ophthalmology and Neuroscience, also at Johns Hopkins. Both Jim and Bob are involved with the Lions Vision Research and Rehabilitation Center, and this center offers a multidisciplinary team of specialists who work to search for an understanding of the causes of low vision. They are working within that context to better manage patient treatment and care and we are going to hear more about the work that they are doing in low- vision therapy.
As you know, every month we feature a different topic for our chats, and today we are learning about low-vision therapy. So Jim and Bob, thanks so much for joining us today.
I would say that if you have a question that you’d like to ask our guests 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, there is a number to call back in, and that number is 877-229-8493. You will then be asked to punch in the ID code 112435.
Jim, I’d like to direct a first question to you. You’re a low-vision therapist, you’ve set up many programs for folks with low vision. I was hoping you could give us a brief overview of what low-vision therapy is and the benefits it provides for patients.
JIM DEREMEIK: Thank you, Guy. What we’ve used at Hopkins as a model is where a patient’s being seen by a low-vision clinician, either being an optometrist or ophthalmologist, who can confirm the medical diagnosis, refine refraction, make sure that all medical intervention has been done, and get some beginning points in terms of strategies, in terms of magnification therapies. These could be used in concert with rehabilitation therapists—being occupational therapists, rehab therapists, service providers in the community—who address the overall needs of the patient both in the clinic and the home. So it’s a service that’s multidisciplinary, it happens within the facility and the rehab agency, on the job, in the home. And it involves many people with the clinician setting the groundwork for the rest of the team to follow through.
We instituted this in a number of different programs over the years here at Hopkins, and we are currently trying to take that and expand that model to make it available to people in Multiple District 22, which is the Lions geographic areas of Delaware, Maryland, and the District of Columbia.
GUY EAKIN: So, we are focused on the call today particularly on macular degeneration and glaucoma, but the prevalence of these diseases is that you see many more conditions than that. I think I read someplace that perhaps as many as 1 in 5 people by the time they get into their 90s have low vision. It sort of begs the question of who has access to low-vision therapy? Are there referrals needed, is it covered by insurance, how does one get involved, and who are your clients?
JIM DEREMEIK: The community at large, as we are going on with the aging population, you are correct that there is a growing demand for the service. The dilemma is that the demand far exceeds the availability, so it’s supply and demand.
What we are trying to do at Hopkins is to set up some innovative programs to help meet that demand for the service by reinforcing the supply in terms of incorporating low-vision rehabilitation service into primary eye care providers right now to address specifically what you say the leading cause of low vision in the country, and that’s the central vision loss, specifically people with macular degeneration. So it’s our aim to have a number of providers throughout this area that anyone can access service within 45 minutes from where they live. The problem is, (1), it’s the best kept secret for even those that provide it, and then (2), once people identify where it is, how do you access it, and if you can access it by knowing that it’s available, how do you get there?
One of the programs that we had mentioned before, this LOVRNET program—the Low Vision Rehabilitation Network—is trying to use and incorporate Lions as foot soldiers to (1) publicize the program in their home community so that there is awareness to identify and match providers up within the community, and (2) to get the Lions to be direct-care service providers by offering transportation to get the patients to the actual clinical low-vision exam, to begin the low-vision rehabilitation process.
GUY EAKIN: So, you are getting into overcoming the barriers that people have in getting to low-vision therapy and you hit on a bunch of them. Maybe I could address this to Bob—I know you have done a lot of research in this area. If you could go through the list of the main barriers that you see in your community to people accessing low-vision therapy, are they structural, are they emotional barriers? What does the group you work with, what constitutes their troubles in getting access to everything that you all have available?
ROBERT MASSOF: Thank you, Guy. Just to elaborate on what Jim just said, one of the main barriers is just the lack of availability of service providers who can work with patients who have low vision from a rehabilitation point of view.
It is kind of a two stage process—whether it is macular degeneration or glaucoma or diabetic retinopathy or any of the other number of age-related eye diseases—once damage is done to the vision from the disease, that damage typically is irreversible. Most of these diseases can be controlled with medication or with surgery or injections, but once the damage has been done, the damage cannot be reversed.
The second stage of care really is to be able to make the best use of the vision that you have, and that is what low-vision rehabilitation services are about. The typical service providers are optometrists, mainly, who provide the front end service, but also some ophthalmologists will offer some low-vision rehabilitation services. Patients with more severe visual impairments typically are passed off to people like Jim, who is a vision rehabilitation therapist who works with patients either in the clinic or in the patient’s home to help solve everyday problems in doing activities.
Another profession that is very actively involved in providing rehabilitation are occupational therapists. Occupational therapy traditionally had not gotten the kind of training that was needed to work with visually impaired patients; however, that has changed over the last 10 years, and more and more occupational therapists are doing extra training in order to work with low-vision patients.
The biggest barrier is simply getting the service providers to offer these services and to coordinate the care. Insurance does cover low-vision services. It covers both the services provided by the eye doctor, whether it’s an optometrist or an ophthalmologist—Medicare in particular, because most people who have low vision are Medicare beneficiaries—and it also covers rehabilitation services that are provided by the occupational therapist.
There are other services through state agencies and so on that can provide low-vision rehabilitation, and sometimes the costs are covered by the state or by federal grants to these agencies. The cost of low-vision devices, which I imagine most people have had the chance to get them already are aware of, are not covered by Medicare currently, and in some cases they are covered by state agencies. If you are eligible for VA benefits they would be covered by the VA. For most people, the low-vision devices themselves have to be paid for out of their own resources.
So, getting the services available, then making both the doctors who would normally refer patients for low-vision services aware of the existence of those services and how to refer to those services, and also making the public and people with low vision aware of the availability of services and how those services can benefit them, is part of an education project.
The role of the Lions Vision Rehabilitation Network, Lions LOVRNET, is to educate the public and to help educate the community eye doctors about the availability of services, to coordinate care and make sure that many of the barriers—such as transportation—are addressed so that people who need assistance with transportation can get it. And also the appropriate reporting mechanisms. Low-vision services can be quite tedious from the point of view of collecting information about how low vision is effecting the person’s life and what activities are important to the person, what activities need to be addressed in rehabilitation. And so the Lions also can assist in gathering history information, because one of the reasons people go to get low-vision services is that they are having difficulty with their vision, and to hand them a clipboard full of forms to fill out is not tenable.
By having the Lions assist with the interview process in order to fill out these forms helps to overcome one of the big barriers to providing service—just finding how to get the information you need in a reasonable period of time, at a reasonable cost.
GUY EAKIN: We are going to talk a little about how the LOVRNET study that you are running. The service, might be extrapolated to other communities. In the meantime, if you are not in that Maryland/Delaware area of service, what would you recommend for people to find out about options in their own areas, be they within urban environments or perhaps a rural environment, as many of our callers are?
JIM DEREMEIK: There is a website called VisionAware.org and on it they have listed by state, they break it down within the state, the individual services. As an example, if you lived in California if you go to, VisionAware.org, that’s V–I–S–I–O–N–A–W–A–R–E.org, it would breakdown by state the services—low vision, rehabilitation, education—and that would be a good starting point. This is not an endorsement, but it’s certainly a point to start to identify where service providers might be to help you begin to obtain low- vision rehabilitation.
GUY EAKIN: Absolutely. We talked a lot about how you find the resources and how you get inserted or interpolated into everything that the community can provide. Jim, once they are in your office, once somebody walks in, can you give us an idea of what it is going to look like from the patient’s perspective? What does it mean to start an engagement with a low-vision therapist? What are the tests that will be run? What does the conversation sound like?
JIM DEREMEIK: Again, what I’m going to give you is an experience from Johns Hopkins. I’m going to qualify that by telling you people don’t come to Johns Hopkins initially for low vision. They come here to be cured. We end up getting the folks after the expectation of vision being restored has been addressed and they realized that this is where they are. We take them from the premise of, “If things change for the better, great, but where we are today is what we are going to begin with.”
The patient would be coming in and, as Bob alluded to, we have the luxury of having history on a lot of these patients before they come through the door. Some preliminary testing will be done to help us. If we have a patient with a central field loss, we will document that with a certain type of testing we have to map out the central field to see where the blind spots are. If it is glaucoma and mobility is concerned, we will do a peripheral field test. If driving is an issue, likewise.
Then that information will be put together and given to the doctor, who will do a clinical low-vision exam. The clinical exam will vary anywhere—if it’s a new patient, roughly 30 minutes for a younger patient that is pretty directed and doesn’t have many needs, to where it could be an hour or hour and a half depending on the level of need and cooperation of the patient. After that, what would happen is the patient, in the same visit, would be referred to rehab while they are there to address some of the goals and begin the introduction to the low-vision rehabilitation process.
What would happen—it’s a two-part process in terms of the visit—the first is addressing the clinical exam with the doctor where, as I mentioned earlier, they are basically confirming the diagnosis, making sure that all proper treatment is being done and there is no active case being answered. Again, our primary intent of the visit today, when we see a patient, is functional.
Then what will happen is the best possible refraction will be addressed and efforts will be taken to improve upon that. One-third of the people that we see we can improve their vision with a refraction. Having said that, the problem is that even though we can improve it is probably not to the level or the expectation that they would like. As an example, we can take a 20/200 person and probably get them to 20/70, but in their mind they would like to go to 20/20.
Just to give you the example, we are testing at much greater differentiations. We are also doing contrast sensitivity testing to measure their differential gradient in terms of shading and intensity. We will do field testing and we will do a near test in terms of vision performance with reading and writing. We have the ability to work with some of the co-morbidity testing so that we can differentiate what is related to vision and what may be cognitive so the rehab can be prioritized and appropriately addressed.
GUY EAKIN: On the topic of—you used the word co-morbidity, but this is the context of other conditions that are present in the patient. I know, Bob, you published some research on the emotional wellbeing of patients and discussed some additional benefits that low-vision therapy might have for people who might be feeling down or clinically depressed. Could you tell us something about that study and the benefits you saw for patients?
ROBERT MASSOF: Sure. Well, depression in particular has a very high rate in the low-vision population. In fact, it is much higher than you see in other chronic conditions and diseases. That is a problem that needs to be addressed.
We think one of the reasons, just from the research that has been done so far, that that occurs is because of the stress and the frustration that is associated with loss of ability to function as a result of visual impairment. Many people with low vision become less active, they become isolated, they stop socializing and interacting with activities that they used to participate in, in the community, and things of that sort. That can lead to depressed mood, which eventually, if not addressed, can lead to full clinical depression.
That problem was addressed in the study that was led by Dr. Barry Rovner who is a Geriatric Psychiatrist at Thomas Jefferson University, to look at the benefits of low-vision rehabilitation as we have been describing it for preventing depression. All of the patients in the study had macular degeneration and had low vision as a result of macular degeneration.
One group didn’t receive any low-vision therapy. They received low-vision services to correct their vision the best they could, but they didn’t receive any of the therapy part of it. They did meet with a social worker on several occasions who came to the home and basically is providing what is called “supportive therapy”—addressing the emotional aspects of how the patient was feeling.
The other group received complete low-vision rehabilitation in the home where they were taught to use various types of assistive devices to help them read, to help them prepare meals, to manage their medications, and all of the other things that are important to do in your home.
The result of that study was that the group that got the low-vision rehabilitation with the occupational therapist had fewer cases, fewer incidents, a lower incidence of depression. These people did not develop clinical depression at the same high rate that the other group that did not get the low-vision rehabilitation did.
That study had quite an exciting result and created quite a bit of interest because it shows that the value of low-vision rehabilitation extends beyond simply restoring function, which is the aim of it, but it also can prevent the development of clinical depression in people who are at risk of becoming depressed.
GUY EAKIN: I think you were somewhat modest in the statement! As I remember the publication, that intervention halved, 50 percent, the incidence of depression in that population. Thank you so much for going over the benefits of the low-vision therapy.
Of course, we have been talking about the study and the services that you are offering in the Maryland/Delaware area. This is the LOVRNET project that has been mentioned a couple of times before. I would like to ask, are there plans to bring this project to other communities, and if there are people on the line who are looking to be advocates in their communities, what could they take from this conversation to understand how to begin that process if the timing is right?
JIM DEREMEIK: Well, to begin the conversation on that, this is a program that is funded by Lions International out of Oakbrook, Illinois with support from the Reader’s Digest Partners for Sight Foundation. We are in the 2nd year of a 3-year grant of a pilot program with the intent that this program will be transferred to other communities.
All of the materials and information that is being compiled and developed is being done so that it is the property of the Lions. This is a program that is a Lions program, meaning that it is being administered with the help of Hopkins but it is clearly and fully owned and responsible, administratively, by the Lions Multiple District 22.
Where Hopkins is helping on that is we are one of the providers of the LOVRNET, which would be similar to other communities. We are helping in terms of preparing professional coursework. The intent on this program is to take it and transfer it out to other sites that would be, again, spearheaded by Lions and local folks that would be providing rehabilitation clinical work, similar to what we have done here at Hopkins.
Right now, we have a number of different areas looking to replicate that and are watching closely as we develop it. We are in the middle of the 2nd year of a 3-year project. My advice would be if someone is interested in this type of program, get in contact with your local Lions and ask them to start gathering some information on the LOVRNET because Lions, LCIF—Lions Club International Foundation—is very anxious to see this succeed and replicated around the country.
GUY EAKIN: Let me start with a housekeeping item. If anyone has a question today, you can ask that question by pressing *3 to submit that question to an operator. If you are disconnected there is a number to call back in, that number is 877-229-8493, after which you will be asked to punch in an ID code of 112435.
While people are beginning to submit their questions, I would like to point out that we will have a transcript available and an audio recording of this conversation available. Anyone who has questions certainly can come to our BrightFocus.org website or call us at 1-800-437-2423. Give us about a week and we can get all of these descriptions, the transcript, back out to you. This will include, for instance, providing the correct spelling of things like LOVRNET and the different contacts that we have mentioned over the course of the conversation today.
I would like to segue into the question and answer session. One of the first questions we had was about portable devices, specific devices that aid in low-vision communities. A doctor and his wife from Maine are asking about portable devices that help with both distance and near vision. Is there anything that aids in driving? Jim, is that something you could address for us?
JIM DEREMEIK: Yes, it is. My first suggestion would be, rather than trying just to go and identify devices, if you have not gotten a clinical low-vision exam, use that as your starting point. Reason being, there are some devices that you can buy online off of the Internet that may or may not meet your need. There are companies right now that basically make their money by restocking items. What you really want is a very defined prescription (1) to make sure, as I mentioned earlier, that you are in the best possible correction before you get anything (especially if you are considering driving).
With driving, states have very specific laws in terms of what you can and cannot use in terms of telescopic devices that are incorporated within glasses that would allow you to meet certain criteria under certain conditions, depending on the state.
Rather than give you a blanket arrangement saying “here is the device,” my answer is yes, there are devices that will allow you to drive. There are devices that will allow you to do distance tasks, watching TV and seeing things up close. I would rather see someone start with a low-vision clinician giving you a recommendation rather than going out and just buying something at will that may or may not work. Kind of like trying to buy a pair of shoes when you don’t know your shoe size. Are they going to work? If it doesn’t, what do you do then?
GUY EAKIN: I hope that addressed that question. There is a similar one that came in. Mary from Illinois is asking about devices that would help with checks or reading the newspaper. Is that the same tenor of advice you would give to Mary?
JIM DEREMEIK: One of the things you could do, while you are trying to get a low-vision exam and trying to identify the provider in your area, is, an item that is often overlooked is a very low-tech item. It’s called large print checks! You can get those from your bank. Two check companies make all of the checks in the country; even though we are going online for a lot of people, they are all through Deluxe, it’s an American standard. It’s gotten a little bit tougher, but if you take your check, go to your bank, they will submit it and they will order a large print check for you. These are some of the large print register, large print check—it’s got a bold raised line, it’s a yellow background, a little bit easier to see, but that may be an intermediary or at least a starting point for you to help out to get some material while you are waiting to get a complete exam and make sure everything is being done properly for you.
GUY EAKIN: Well, I think for many on the call I would say you heard it here first! Certainly, many of us were not aware that banks could offer that type of service.
I do want to point out that both of our guests today are not ophthalmologists, they specialize in the research and provision of low-vision therapy, and so discussion of specific drugs or clinical advice about the diseases is probably outside of the scope. We will return to those conversations in future BrightFocus Chats.
At the moment, we have a call from, or a note, from Margery from California who is asking about Charles Bonnet Syndrome, and this is a syndrome that causes hallucinations that many people with low-vision experience. I was wondering if there is anything that you could say from a low-vision perspective about coping with Charles Bonnet Syndrome.
ROBERT MASSOF: First of all, the best understanding we have of it is that we know that vision is a very active process. It is not simply like a video camera where you take things in. You can think of it more as information is being gathered and the brain is filling in the details so that a lot of what we see is invented by the brain based on just sampling visual information.
If you have a blind spot in the center of your vision and the macula is to vision like your fingertips are to touch, that is where very high resolution, detailed vision takes place. If that area has a blind spot, the brain doesn’t just ignore it but it actually tries to fill in what is missing. Sometimes these can be very vivid and can be animated and you can see children playing, flowers, there are all kinds of things. It does not mean that you are going crazy. It is not a hallucination that would suggested psychosis or anything like that. This is just the visual system, the vision part of the brain, is trying to fill in details and make sense of what is around the blind spot and will trigger sometimes memories, sometimes brand new experiences.
The hallucinations that occur—I’m almost hesitant to use that term because it’s so loaded—but it’s not the same thing as the types of hallucinations that schizophrenics or what we hear psychiatric conditions might be experiencing. These are quite benign and probably the best advice is when you experience them, just enjoy them. It is nothing to be alarmed by and it’s not a sign that you are having psychiatric problems.
GUY EAKIN: On the subject of loaded statements, we have so many people who have asked the question, “Am I going blind?” In the context of macular degeneration and glaucoma, recognizing that you are not ophthalmologists and we can’t provide medical advice over the phone, what would you advise telling patients about macular degeneration and glaucoma from the standpoint of answering the question, “Am I going blind?”
ROBERT MASSOF: Well both conditions can be controlled. With glaucoma, it’s important to control the eye pressure. It is important to take the medications that are prescribed, which are designed to control eye pressure—that’s what causes the damage in glaucoma. And to visit the eye doctor on a regular basis to make sure that the drugs are doing the job they are supposed to be doing at the dose that is prescribed. Many of the people who go blind from glaucoma, it is simply because they haven’t been taking the drugs or they haven’t gotten the medical attention they need at the right time.
Same is true now with macular degeneration—especially the wet form of macular degeneration, where blood vessels are growing under the retina. It’s the hemorrhaging of those blood vessels that grow under the retina that cause the vision damage that causes the blind spot in the center. Those blood vessels can be controlled with an injection of drugs, but they require regular injections. That means visiting the ophthalmologist on a regular basis to make sure that the macular degeneration is being controlled and that, if you are on a treatment regimen with the injections, you are getting them on a regular schedule as you should be. Following the advice you are being given is the best advice that we could give.
GUY EAKIN: Thank you so much. I hope that answered that question. We have an interesting question from Lynn from New York. Lynn had 93 birthday candles on her last cake and has had AMD since 1988, age-related macular degeneration. She is asking if low- vision therapy could help her. Is there a timeframe for low-vision therapy? Is there an age cutoff or a duration of the disease at which the low-vision therapist might have limited results? Or will you take all comers?
JIM DEREMEIK: It’s a service that is open to anyone and everyone that has a specified need. Age is not a barrier nor is it a criteria for service. The motivation would be more the driving factor right there. We have seen, in terms of age range, to give an example, we have seen from 6 weeks in our clinic up to 104 and everything in between. Again, I would not use that as a criteria. I would go more by need. If you are having some functional difficulty with your everyday tasks, that’s the time to go back to your eye care provider and ask him or her, “Can you refer me to a local low-vision rehabilitation service?”
You may get some help with mobility services, helping you get around—especially people that have central vision loss from macular degeneration or those having difficulty with drop off steps, things that might impact glaucoma. They are being told there is nothing to be done medically, which in one way may be true, but there are certainly things that could be done functionally. So, I would not take that as an answer because you are a certain age.
GUY EAKIN: We have a similar question from Carmen from Florida that was submitted through email earlier in the week. She says that sometimes she feels like she is making her eyes work harder than they should, especially when she is at a computer. She is asking, should she start using low-vision aids even though maybe she doesn’t need them yet? Is there any advantage to starting early with the hope of maybe training oneself to use the aids before low vision occurs? Is that a viable strategy?
ROBERT MASSOF: I can take that one. Using low-vision aids won’t cause any harm if that is the concern. If it makes it easier to perform the activities then there is certainly no reason not to use the aids. I have some dry eye and when I’m using the computer for a long time I will start to get blurry vision. I have my clip-on loops that I use for when I get to that point. I’ll pull them out and put them on my glasses. It’s more a matter of making it comfortable to do the things you want to be able to do and to make it easy to do it. If they help you, you should use them.
GUY EAKIN: Eileen from Ohio has phoned in and asked if there is an added eye exam or test to help determine the prescription of people with AMD who might need glasses other than readers. Maybe, Jim, if you could just describe the detail of the test that you might do in your offices. Is there anything that somebody could do at home as a stopgap to get an idea of devices that might help, specifically with any type of glasses that might aid them in their own home?
JIM DEREMEIK: To address the issue of glasses, that is one of the main reasons you are getting the clinical low-vision exam rather than just picking up a magnifier. One of the dilemmas that we run into is that many people pick-up over-the-counter readers from the drug store that you can usually get up to a plus three without getting any kind of prescription. Most of the folks that provide low-vision service are optometrists because they’ve probably had more school and practice in doing refining and refraction. There is no reason that with training—and that’s one of our goals with LOVRNET, to take folks doing primary eye care and teach them some basic skills that they have learned in school and refresh them, so that rather than just going up to a plus 2.5 reading add, which we will all need as we get a little bit older, to be able to go up to maybe a plus 4 where the difference is now those glasses are stronger, you just have to pull it in a little bit closer. There is nothing magic about it. You make it stronger, you pull it in closer, the image is going to get larger and you are going to free your hands up from what you are doing now—currently going out and getting over-the-shelf magnifiers.
What I would not do is try to go and remedy this at home by going and buying countless pairs of glasses. We have patients come in now with bags of glasses, none of which are perfect. Many of the glasses aren’t theirs. They are their spouse’s, family members’ that they have done by trial and error, and that all could be corrected if you find the right provider because there is a science to this. There is an evaluation. There is a logic behind coming to a given point where you take an image and put a certain focal point and it, many times, can be corrected.
GUY EAKIN: Thank you. We have a caller, Dennis from New York, who is asking, “How do we get better information to our low-vision people, especially when the doctors are only giving out basic information during the clinical visits? How do we do this without using the Internet?” I would start by saying, Dennis, I hope that is what we are doing right now. That is certainly why we started the BrightFocus Chats. I hope that people have found them to be helpful. Jim or Bob, do you have any other suggestions for how, without using the Internet, we can raise awareness about low vision and the diseases that cause low-vision disorders, and the opportunities for low-vision therapy.
JIM DEREMEIK: One of the intents of what we are doing right now, if we go back to when we started the program, was—with the LOVRNET—by going to the grassroots community with the Lions in the community who know the eye care providers. They begin to educate and inform the local optometrists and ophthalmologists that they deal with and live with to get them to be part of that club, to tell them about low vision, to get them actively involved and begin in a grassroots movement.
Professional organizations, both for optometry and ophthalmology, have it in their guide of practice to include low-vision rehabilitation as part of it. To have it is one thing, but to actually implement is another. They are going to respond much quicker to the people in the community who are their potential patients that are going to see them on a regular basis. That is one of the approaches that we are trying to encourage with this LOVRNET program, to make it a very fluid and active give-and-take between the eye care provider and the Lions in terms of being foot soldiers in their community. Bob?
ROBERT MASSOF: Also providing public education. Many people are of the opinion that failing eyesight is just part of aging, therefore you just have to accept it and live with it when, in fact, it can be assisted and you can live your life with much more ease and happiness if you get some assistance and the appropriate tools. Educating the public, educating the community, is an important part of it, and—like you said, Guy—what you are doing right now is an example of the type of programs that are needed and need to expand.
Another way of getting low vision out is that many organizations sponsor various types of low-vision support groups, which are not so much support from the point of view of emotional support, but also support from the point of view of education, sharing tips with each other, and putting on programs for the general public that make people more aware. A lot of people think of blindness as either you are blind or you are not blind, or think of visual impairment as something that is just a severe state. The actual fact is that low vision is a continuum that extends from early mild impairments that may have its major impact on reading and on driving, to much more severe.
The vast majority of people with low vision are in that milder category and can be helped with fairly simple strategies, fairly simple devices, fairly simple techniques. People who are completely blind represent a very small percentage of people who are visually impaired. There are close to 4 million people in the country who would be classified as having low vision and there are only about 100,000 who have no useful vision—who we would consider totally blind. There is that whole spectrum.
You don’t have to wait until you are at a particular point to get services. You should go after services as soon as you are having difficulty doing the things you want to do, and for different people that may be at different times depending on what it is you are trying to do. People who have very demanding activities, from the point of view of very visually demanding, someone who is an artist, a visual artist, someone who is a marksman that wants to be able to shoot their rifle—you could imagine a wide variety of activities where the visual demands are much greater, whereas other people may be engaged in activities that aren’t quite as visually demanding. They might seek services at different points depending on how much the vision is impairing the activities that are important to them and how much they want and need to be able to do.
GUY EAKIN: Well thank you so much. Unfortunately, that is about it for the time that we have today. I do want to take a moment to thank Jim Deremik and Bob Massof of Johns Hopkins University for taking the time out of their day to speak with us about low vision and about the LOVRNET program.
I wanted to add that many of the questions that you might have we can address through the call bank that we have here at BrightFocus Foundation. That’s 1-800-437-2423. We are here and are committed to providing information that you may need.
Please take a moment to let us know if this Chat answered some of the questions that you had about low vision today. We would like to conduct a poll as we do at the end of most of these BrightFocus chats. If you would press 1 on your phone, if you found the topic today very helpful, press 2 if you found it somewhat helpful, and press 3 if it was not so helpful. Again, that is 1 for very helpful, 2 for somewhat helpful, and 3 if we have a little bit more work to do.
Again, I do want to thank Bob and Jim for taking the time to speak to us and everyone who joined the call and asked questions. Within about a week we will be posting a recording and a transcript of the call on our website. You can also listen to and download post chats through iTunes or SoundCloud, or you can call that 1-800-437-2423 number. There you can order a large print transcript of the call.
Our next Chat will be entitled “You and Your Eye Exam: What to Know and What to Ask.” That will be on Wednesday, May 27th, 1:00 p.m. Eastern/10:00 a.m. Pacific, and that will be with our guest Dr. Emily Chew from the National Eye Institute, who happens to be one of the key scientists behind the AREDS trials that we mention so frequently on this program.
We encourage you to register and submit questions in advance. If you are registered now, we will be sending you a reminder email in the near future. In fact, you can register for the May chat right now and request free materials from the BrightFocus Foundation, like our “Macular Degeneration Essential Facts” brochure, by calling BrightFocus at the number I mentioned earlier, 1-800-437-2423, or visiting our website at BrighFocus.org.
Thank you again to everyone for joining us today, thank you Jim and thank you Bob for providing your expertise. If anyone would like to leave a comment after the call, just stay on the line. Thank you from all of us at BrightFocus Foundation and have a great day.
The information provided in this transcription is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should be taken only under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.
- BrightFocus Foundation website, www.brightfocus.org, or call us at 1-800-437-2423.
- Resources for independent living with vision loss, visionaware.org.
- Lions Clubs International is a secular, non-political service organization, https://www.lionsclubs.org.
- LOVRNET Study (in Maryland, Delaware, and Washington, D.C.), http://www.lionsvision.org/LOVRNET.
- Low-low-vision devices
- Banks offer large print checks.
- Driving laws and allowable devices differ by state—start by going to a doctor fora low- vision exam and ask what can help you.
The information provided here is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should only be taken under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.
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