AMD: Getting the Help You Need (October 2020)

BrightFocus Foundation
AMD: Getting the Help You Need
October 28, 2020
1:00 p.m. EDT

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

MICHAEL BUCKLEY: Hello, I’m Michael Buckley with the BrightFocus Foundation. Welcome to today’s BrightFocus Chat: “AMD: Getting the Help You Need.” If you’ve been on a Chat before, welcome back. And if this is your first Chat, thank you very much for joining us. Today’s guest is Dr. Ranjoo Prasad. She’s an optometrist at the University of Pennsylvania Medical Center in Philadelphia. She provides a lot of vision therapy and helps with support groups and other things that help people gain more independence while living with low vision. So, Dr. Prasad, welcome. I know we’ve had you here a few times over the years, and we just really appreciate your sharing what you do, so let’s start off and tell us about yourself.

DR. RANJOO PRASAD: Thank you, Michael. Thank you for having me once again. I am currently the Director of the Penn Center for Low Vision Rehabilitation at the Scheie Eye Institute here in Philadelphia, and I’ve been in practice for over 22 years, and I work with a wide demographic of patients and diseases and try to help patients become more functional.

MICHAEL BUCKLEY: Now the Career Day question… how did you end up doing this?

DR. RANJOO PRASAD: I always knew I wanted to be in the health profession and knew that sight was the most important sense and basically wanted to help people see and keep their vision, but I found that working with the blind and visually impaired to be particularly rewarding when I was a fourth-year student and decided to go that route through specialized training.

MICHAEL BUCKLEY: I know you have several different roles that you have at the University of Pennsylvania Medical System. Do you want to tell us a little bit about occupational therapy or vision therapy and the type of work that you do?

DR. RANJOO PRASAD: Basically, my job is to help those with vision loss gain independence and ultimately have a better quality of life. But through their examination and prescribing of special optical and non-optical devices, glasses … and I also refer training with occupational and rehabilitation therapists. I also refer to resources—such as state agencies, local agencies for the blind and visually impaired—so the individuals can get more help. Now, an occupational therapist and a rehabilitation therapist—basically, their goal is to improve somebody’s function by addressing particular goals. For example, they provided device training. So, if I were to see somebody and they required a magnifier or telescope, they would go ahead and help them with it. Train them. And they also provided adapted techniques, home environmental modifications, as well. Now, vision therapy is a little bit different. It’s basically training of the eyes—for example, in the case where they do not work together, when one eye moves in and out; also if people need help following targets, which is called tracking; and also to help people scan or look in a particular way.

MICHAEL BUCKLEY: We’ll get into a lot of the details over the next half-hour or so, but I was wondering if you could kind of give us a big picture sense of what are some of the major challenges facing people with diseases like macular degeneration?

DR. RANJOO PRASAD: One of the studies I could say showed that people with vision loss, such as macular degeneration, the hardest thing that they have … the hardest thing for them to do is to read. So, reading is one of the most challenging things, like reading the newspaper, reading their mail. Other things are doing things around the kitchen, preparing meals. Basically, being independent is challenging for them. There’s a sense of isolation, as well; the fear of going blind; and in addition, they require additional support, too, so there’s always that fear of not having the support they need, staying connected, staying social, getting help … and getting the help that they need.

MICHAEL BUCKLEY: Dr. Prasad, I think this is a really well-timed discussion that we are having today. In addition to the pandemic, it’s getting dark early here in the Northeast and Mid-Atlantic, and it’s been raining a lot. So, it’s getting harder, and then a lot of us are starting to think about the holidays—and that means so many different parts of the holidays, but a lot of people just don’t know what they’re going to do this year for the holidays. I guess sort of big picture, with all these challenges, how do people ask for help? I know a lot of us come from family backgrounds where we were really brought up to be independent and resilient. How do you reconcile that part of American culture that doesn’t like to ask for help with a lot of those challenges that you mentioned a minute ago?

DR. RANJOO K. PRASAD: What I’ve found my experience is that my patients will not ask their loved ones for help, but they will come to me and tell me that they require help. So, I kind of help them through that. I help kind of them go through the thoughts and emotions and basically to kind of say that it’s okay to ask for help and typically asking your closest loved one first and say, “Listen, I’m having problem doing this,” or “I have problems getting out,” etc. It’s reconciling the … acknowledging that, “It’s okay that I need help.” Otherwise, what’s the alternative? Staying isolated. And a lot of times, people who are your loved ones will not know what you need until you actually say something.

MICHAEL BUCKLEY: That’s great advice. And I think that really brings up the holiday gatherings and everything really well. A lot of people, particularly the grandparents in intergenerational families, think of themselves as the ones who want to host Thanksgiving or Christmas or New Year’s meal. They want to be the ones that do the shopping and go out and buy the gifts and wrap them and mail them. A lot of those things are tough because of vision loss. Any advice for … I don’t want to say essentially “letting go,” but again, that kind of balance of the role that you’ve always served in the family as that organizer, the cook, the host, and the shopper. How do you … it’s got to be real hard with low vision.

DR. RANJOO PRASAD: It is. It is. And especially with the present time, too, with COVID, so you’re not able to be social and out and about and invite people in like you used to. One of the things that everybody has probably heard about is people having Zoom meetings, FaceTime, video chats. For example, we have a low vision support group, and our facilitator had her first Yom Kippur gathering virtually—or her first holiday gathering virtually—where it was just her and her family, and then they had everybody else around joining them. And what they realize was how wonderful it was to have that, even though it wasn’t in person, but they knew that they could do this more often, too. For example, if you are one who is constantly the organizer—who’s always been the organizer—you can still be the organizer. You can still plan a menu and have everybody make the same menu, but then sit around a virtual dinner. So, yeah. Yeah.

MICHAEL BUCKLEY: It’s going to be a tough, big change. I think those are great tips to find new ways of keeping traditions. And in terms of the reduced light, which I think will only get worse when we switch the clocks in a week or two, people’s houses get a lot darker. Obviously, there’s less outside light, which gets into safety around the house. Any tips for listeners about how to stay safe around the house, particularly as the daylight grows shorter?

DR. RANJOO PRASAD: First and foremost, make sure you have good light in your environment. And if you need help with the lighting, you can always contact an electrician, or you can go to any of the large stores like Home Depot or Lowe’s, where you can ask the workers there to help you pick out the proper lights or how to organize things, as well. Occupational therapists can help. The other thing, too, is make sure you don’t have curtains that are on the floor level. Make sure your home is clutter free. The other thing, also, is your walkways—like, for example, if you have hardwood floors or if you have ceramic floors, be careful with the area rugs, because those are trip hazards, as well. Basically, keep it clutter free—keep the house clutter free—and have good lighting. The other thing, too, is look at your tables to try to see if your coffee tables or your kitchen tables have rounded corners instead of like the sharp corners, too, because that’s hard to see.

MICHAEL BUCKLEY: That’s great advice. And in terms of asking for help, a lot of people just don’t know where to turn. Are there national organizations or local groups that could help provide a lot of these day-to-day services—the meals, the transportation, things like that?

DR. RANJOO PRASAD: Yes. Every state has a state agency for the blind and visually impaired, and they have county divisions—county chapters of it. They also … there are also local agencies, as well. For example, here in Philadelphia, our state agency is the Bureau of Blindness and Visual Services. And locally, in Philadelphia, there’s another nonprofit agency called Associated Services for the Blind. So, they’re local, but there are also state agencies or national agencies, such as the National Federation for the Blind and American Foundation for the Blind, as well. And those resources are accessible through the internet. Within those websites, they have chapters and resources that are local, too—local or statewide, I should say. So, once you get connected to those, then you can find the state and local resources, as well. You can also reach out to the local Lions Clubs. The Lions Clubs International’s mission is prevention of blindness and preservation of sight. So, they’re also a good resource. In New York City, there’s Lighthouse Guild, which is nationally known. And then also, in the county, there’s Division of Senior Services, too. They have a tremendous number of resources that way.

MICHAEL BUCKLEY: We just got a question from a listener about the holidays: any ideas for how people could not do shopping or do some of the shipping of gifts? Any suggestions for how to make that a little easier or safer?

DR. RANJOO PRASAD: I find that shopping online is fantastic. Amazon’s great. All the stores have online shopping. I know it may be harder to see, but connecting with another loved one, a friend who can help you with the shopping or with accessing it online, would be great, even connecting with local volunteer organizations, as well. A lot of people’s religious organizations have volunteers who can help out. So, instead of shopping in person, I think shopping online is a great option.

MICHAEL BUCKLEY: I think it kind of reinforces your point—your core point—of asking for help, and then maybe there’s people in your community or in your family that want to help but just don’t know that you need it.

DR. RANJOO PRASAD: Yes.

MICHAEL BUCKLEY: So, if all this isn’t enough, we’re also in the middle of a pandemic that … in your experience in optometry and vision rehab, if people’s vision appointments are getting spread out a little bit more than they used to, any tips for how people can look out for any early warning signs of vision problems that might happen in between those appointments?

DR. RANJOO PRASAD: Absolutely. So, for those with macular degeneration, almost everybody has an Amsler grid at home, so definitely check that regularly in each eye. But the main thing is just pay attention to your function. If you’re reading, if you’re … if things get blurry or if the words and the letters appear like they’re broken or missing, or parts of it’s missing, then you know that there’s a change. If you notice that your distance vision slightly changing, if you have difficulty seeing in different lighting situations, those are things to pay attention to. Those are areas to pay attention to.

MICHAEL BUCKLEY: Dr. Prasad, I think it’s understandable that some people may be a little anxious about going to their appointments, particularly ones that might be in a larger medical setting. So, just wondering, you got your experience in your clinic and with your colleagues over the last 7 months. Are these concerns of catching the virus, are those reasonable, or is there … what are some of the steps that you and other have taken?

DR. RANJOO PRASAD: It is reasonable. Anytime that you have large numbers of people or more people in an indoor environment, the risks do increase. However, we had done an internal study where they looked at the transmission or they looked at the exposure rates among providers, and it actually turned out to be pretty low. And what they found was that as long as you’re masked and the patient’s masked and the exposure is of less time, the risks are still very low. So, yes, there is … I can completely understand the reasons of concern, but we are taking every precaution. We have the proper PPE. Most providers do. The environment is … there’s cleanliness happening. We’re wiping down everything, and the waiting areas are not as crowded, because we’ve removed chairs. So, you’re not going to be crowded in with a lot of people as may have happened previously.

MICHAEL BUCKLEY: All quite abruptly, many Americans started doing telemedicine appointments, and that was a big change for a lot of people. I was wondering, in your experience, how do you think telemedicine is going?

DR. RANJOO PRASAD: It’s actually going very well. There are many departments that still use it regularly and consistently. Some providers are doing it twice a week. I’ve had several telemedicine appointments myself. And I care … it varies. I can say for myself that I’m doing most—like almost 100 percent—of my patient care in the office as opposed to telemedicine, but for those individuals who are afraid to come in and have functional issues and questions, I do reach out to them or I do have a telehealth visit or video visit to address their needs.

MICHAEL BUCKLEY: Any tips for people to make a telemedicine go better?

DR. RANJOO PRASAD: For someone who’s blind or visually impaired, I would recommend having somebody with them, if at all possible, so they can help set up the video visit. Phone visits are obviously easier, because it’s just a call, but if there could be somebody with them to help them—to help facilitate, I think that would make the video visit quicker. And also, to let your doctor’s office know that you are visually impaired, so they’ll know that ahead of time and help assist you as needed.

MICHAEL BUCKLEY: Those are good pieces of advice. We’ve got a few interesting questions about some of the points you made about independence and life around the home. A caller from Florida is wondering, in terms of buying a reading light, are there particular types of reading lights or nature of the bulbs or something? What makes a good … the best reading light?

DR. RANJOO PRASAD: It’s actually specific to the patient, because everybody’s needs are different, but I can tell you what my … what I found to be most helpful is using just a basic architect’s lamp. So, a lamp with a hood, so you have direct light. Positioning it on the side you can see pretty close to the paper. You want a direct light as opposed to a diffused light. And many tend to do better with warmer tones as opposed to cooler tones. So, instead of something that’s bright LED, like fluorescents, that they have … choosing something that’s warmer. Now the LED bulbs, they have … they also come in different tones, I would say—different color temperatures. And going to the warmer shades and the kelvin equivalent—the color temperature equivalent—would be about 2,700 as opposed to going to something that’s more blue, which is a little bit higher. And as far as the brightness of it, about 1,100 illumines, as opposed to previously, it would be about 75—the equivalent of 75 watts.

MICHAEL BUCKLEY: We have a listener from Kansas looking for tips on how to best see their tablet or computer screen.

DR. RANJOO PRASAD: That can be challenging at times, because it also depends on your level of acuity, too. So, it depends on how well you’re seeing. So, someone who has a little bit less of an impairment will see a bit better versus someone who has a little bit more of an impairment. What I would probably recommend doing is the next time you’re at your doctor’s—either your … one of your eye doctors, if you have an optometrist or low vision specialist—is take your tablet with you and let them know that you’re having difficulties, since sometimes they can find a pair of glasses that can help focus it better. But it all depends on what your level of impairment is and, also, what you want to see, too.

MICHAEL BUCKLEY: That’s a great idea to bring it … bring it to your appointment. And I think a lot of these issues are rooted in the challenges of isolation that many people feel, and my understanding is that you’ve created and run support groups for people with low vision. I was wondering if you could tell us a little about what you do and how you think that could be helpful.

DR. RANJOO PRASAD: Oh, absolutely! So, a couple years ago, we had decided to start a Vision Loss Support Group—and that’s the title—and when we were putting it together, a lot of questions came up of who would benefit from it? What group of people? Do we want people with severe vision loss? Do we want people with moderate? Do we want just macular degeneration? Do we want just glaucoma? Because different levels of vision is … people who have different levels of vision have different needs than others—when compared with others—and also, people with different diseases have different needs. So, we decided that we couldn’t keep anyone away, so we just left it open for everybody, and it’s been running for about 3 years now. It’s extremely successful. We run it once a month. It was in-person prior to the pandemic, and now we are doing it virtually. And, basically, most of the people call over the phone as opposed to doing it through video. So, it’s been wonderful; it’s been a wonderful way for people to connect. We’ve had a lot of new members, and I think were up to about 90 registered members, but there’s usually about 20 to 30—about 20 or so—who call in. But, yeah, we’ve only had positive things, because one thing is, everybody learns from each other. So, it’s very helpful for people who’ve joined the group and who’ve never had been connected with others.

MICHAEL BUCKLEY: I think that, virtual options really open up opportunities for people in rural areas, because—I know in people with low vision in a rural area—it seems like there’s quite a few challenges. I know that Pennsylvania has a vast expanse between Philadelphia and Pittsburgh. So, in your experience, any tips for people in rural areas in terms of isolation and receiving treatment and daily life?

DR. RANJOO PRASAD: For people in rural areas, the most important thing to do is connect, obviously, with their providers—so, I’m hoping that there is an eye doctor that they are seeing on a regular basis that’s somewhat nearby to them—and then also connecting with any of … with the state agency, too, because the state agency has chapters and people in the different areas that they serve. Also, to know … to find out whether their providers—low vision providers—do provide telehealth services, because that’s been really up and coming. I know the VA has piloted a program with telemedicine and low vision, too, which has been pretty successful.

MICHAEL BUCKLEY:  A key part of all this is driving the very basic question that I think is on a lot of people’s minds: When you get AMD, do you lose your driver’s license?

DR. RANJOO PRASAD: Not all the time. It depends on the level; it depends on where you live, too. It depends on how you’re seeing. Every state has requirements for vision for driving. Some have … some also incorporate the peripheral vision, and as we know with macular degeneration, you don’t lose your peripheral vision, so you’ll always have that. However, your central vision is what tends to matter, and that varies on state. So, people who are in the early stages—whose vision isn’t reduced—should not be discouraged, but the best thing is to discuss that with your doctor.

MICHAEL BUCKLEY: That’s good to know. I think that truly strikes to the core of independence. Dr. Prasad, we had a listener wondering, are there any specific devices that could help somebody with night driving?

DR. RANJOO PRASAD: With night driving … that’s a tough one. There is a device called a bioptic, which is a distance telescope that’s mounted onto a pair of glasses. It’s not for everybody, and it’s not in every state, and it may or may not be used for driving. So, I can’t answer that, actually, if there is a specific device just for driving, unfortunately. Yeah, that’s a tough one.

MICHAEL BUCKLEY: In your support groups with your patients, have you ever had to provide some assistance to a family member to maybe initiate a conversation? I would think this would be an extraordinarily difficult conversation for a family to have. So, any tips for people on either side of that conversation?

DR. RANJOO PRASAD: Oh, absolutely! I address that all the time. I’ve had people who—individuals who—were very accepting and knew it was coming and were okay with it, and they already had plans to make alternative arrangements. Then, I had the other extreme where I’ve had people cry. I’ve had people scream at me. So, it’s a tough one, but I address it. I think family members need to also address it, because there is a lot at risk when somebody does not meet the requirements, and the best thing to do is discuss it with the doctors, discuss it with the primary doctor, discuss it with the eye doctor, and it’s just something that I don’t think anyone should hopefully shy away from.

MICHAEL BUCKLEY: I agree. The consequences are very severe, but I think of some people that I know in my life that are just so proud to be independent and that giving up the keys would be just a really hard conversation.

DR. RANJOO PRASAD: Yeah. Yeah.

MICHAEL BUCKLEY: Sometimes life requires conversations like that.

DR. RANJOO PRASAD: Sure. Sure. But there’s also a lot of alternative means of transportation, especially in this day and age, between ride shares, Uber, Lyft, public transportation in certain areas. A lot of the states and counties have medical transportation for people with … who can’t drive or can’t get to their appointments, so that’s always something to look into, as well.

MICHAEL BUCKLEY: That’s great. And again, it just keeps reinforcing a major theme of today’s conversation about: Ask for help. And there are good resources out there. All across the country, we have a week to go until Election Day. Any tips for people with vision impairment about getting themselves to the polls and making sure they’re able to vote easily and without risk of making error? Any sort of big-picture advice about voting over the next week or so?

DR. RANJOO PRASAD: Absolutely. So, if there are any questions or doubts, you can get in touch with the county elections office and the state election office. This year, they’ve … there’s a big voter push. There’s a lot of things set in place for people with vision impairment and other disabilities, as well. If you’re voting in person, some states have voting booths that have, I think, large … they’ve got large ballots on them, and then also with headphones and audio, too. But again, it varies based on the state. There’s a number of resources out there, too. There’s an app called “Be My Eyes,” which is available on the iPhone and the Android. So, this app connects the user—the visually impaired user—with a virtual volunteer who acts as their eyes. So, they help them through the camera do any type of assigned task, whether it’s assigned, whether it’s read their mail. But this year, Be My Eyes has connected with a website called Vote.org that can help individuals with their voting—with any voting issues or questions that they have. And another resource is through the American Association of People with Disabilities (AAPD) that has a wonderful site where they’ve linked all of—anything and everything, I feel—that has to do with voting and people with disabilities.

DR. RANJOO PRASAD: The other thing is, also, if you haven’t brought in your ballot yet, I would recommend probably dropping it off in a drop box rather than putting it in the mail. I would bring a trusted friend with you—a trusted someone with you—to bring you there.

MICHAEL BUCKLEY: Those are great, great tips, and, obviously, one of the most important parts of being a citizen is to vote, and I think these are really helpful tips so people don’t … can continue to exercise that right, regardless of their health. A question from a listener about some of the technologies that are available. The listener’s wondering, are you familiar with a technology that can scan written text and then play it back in an audio manner?

DR. RANJOO PRASAD: It depends. If they’re referring to something on a phone, there are apps that do that. There’s an app called KNFB Reader. So, the Kurzweil-National Federation for the Blind (KNFB). That’s an app that’s available on the phone. There’s a device called the OrCam, which is the small little camera that attaches to a pair of glasses that can scan a document and read it to you. There’s something called the MyReader. There’s a lot of technology that’s out there.

MICHAEL BUCKLEY: Another listener is wondering, in your work with vision therapy, is there any … are you able to restore people’s vision—make things better—or is it more of a function of not having your patient’s vision get worse? How do you … what are some of the ranges or definitions of success in your work?

DR. RANJOO PRASAD: When it comes to training and therapy of the low vision patient, it is not restoring the vision at all—it’s not restoration of vision. It is using whatever vision they have remaining or using whatever other senses that they have and optimizing that, trying to make it more functional.

MICHAEL BUCKLEY: Can any of that work on a printed text? If I had the newspaper in front of me or the technologies like that, or are they more based off of screen reading? If somebody had the physical newspaper in front of them, are there any tips or types of glasses or anything that could help that person?

DR. RANJOO PRASAD: Yes, it depends on their level of acuity and their condition, too. There are high-powered reading glasses. There’s magnifiers. There’s text-to-speech readers. There’s a number of options available, but again, it depends on their level of acuity, their diagnosis, and also what they want to see.

MICHAEL BUCKLEY: Well it sounds like there is a lot of good, good tips out there. Good technologies. So, Dr. Prasad, in closing, I was wondering, you say you’ve been in this field for a few decades. Are there sort of overarching things that you’ve learned or one piece of advice that you’d like to share with our audience today?

DR. RANJOO K. PRASAD: Yes, so, honestly, the biggest things I’ve learned in my career is that I feel my patients have been my best teachers, actually. I’ve learned so much through them, which … and I’m able to share that with others that I’ve come across. And the advice that I would give individuals with visual impairments is that, most importantly, stay vocal … be vocal and stay vocal and stay connected with people and let them know how you’re feeling. And also, to know that there’s resources and help available.

MICHAEL BUCKLEY: Well, that’s great. I think that is great advice, particularly as we head into the pandemic and all the weather and light changes of this that come with the season. And again, I think just the point that you’ve made so well today about asking for help and that there are resources out there, but it’s often incumbent upon you to make the first step to sort of figuratively raise your hand is just a great point for us to take away from the discussion. And so, Dr. Prasad, I just want to thank you so much. You’re just a ... very positive in a lot of very specific tips to help us through low vision during the pandemic and low vision during the winter.

DR. RANJOO PRASAD: Thank you. Thank you so much for having me.

MICHAEL BUCKLEY: Always a great conversation with you, Dr. Prasad. On behalf of BrightFocus and Dr. Ranjoo Prasad at the University of Pennsylvania, thank you very much for joining us, and thank you for your great questions. We will talk to you soon. Thanks.

DR. RANJOO K. PRASAD: Thank you, Michael.
 

BrightFocus Foundation: (800) 437-2423 or visit us at www.BrightFocus.org. Available resources include—

• Amsler grid (Download or Print)
• BrightFocus Foundation Live Chats and Chat Archive (Audio Presentations on Macular Degeneration)
• Safety and the Older Driver (Publication)
• Clinical Trials: Your Questions Answered (Publication)
• Healthy Living and Macular Degeneration: Tips to Protect Your Sight (Publication)
• How Low Vision Services Can Help You (Audio and Transcript)
• Macular Degeneration: Essential Facts (Publication)
• Research funded by BrightFocus Foundation
• The Top Five Questions to Ask Your Eye Doctor (Publication)
• Treatments for Age-Related Macular Degeneration (Fact Sheet)
• Understanding Your Disease: Quick Facts About Age- Related Macular Degeneration (Article)

Other resources mentioned during the Chat include—

• Bioptic device
• KNFB Reader
• OrCam
• MyReader
• Be My Eyes