Living Your Best Life with Age-Related Macular Degeneration

Dan and Christina Roberts
Having retired from a half century as a teacher, author, composer, theatrical director, and musician, Dan Roberts now dedicates himself full time to helping others learn about and live with low vision. Because of his own need for support and information about visual impairment, he founded MD Support in 1995 and has since become a leading patient advocate, industry consultant, and low vision educator. Christina has extensive experience with caregiving. She and Dan have been married since 1968. They have three children and seven grandchildren.


Listen to the discussion:

Duration

00:37:44

BrightFocus Foundation
Living Your Best Life with Low Vision
July 24, 2019
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 or welcome back to the BrightFocus Chat. Today’s topic is “Living Your Best Life with Low-Vision.” We have two guests today who are going to give really valuable perspectives and answer your questions. Today, we have Dan and Chris Roberts. They are a husband and wife from Missouri, and they’re going to talk today about how they’ve been impacted by vision loss, how they’ve become advocates for people that are facing vision loss, and they’ll be able to answer a lot of questions about how to live life as best you can with low vision. If you’re new to the BrightFocus Chats, welcome. Let me tell you what we do. Each month we spend about 30 or 40 minutes with leading experts on vision disease and eye health. Today, I’d like to turn to our guests, Dan and Chris Roberts, who are going to tell you a little bit about their experience with low vision and caregiving, and they’ll offer some tips and will be glad to answer your questions. So, Dan and Chris, tell us a little bit about your background and how you came to be where you are today.

DAN ROBERTS: Hi, Michael. Thank you very much for inviting us today. We love to talk about our experience because we hope it helps other people, as well. I was a former teacher—I am a former teacher—and when I was nearing retirement age, I was diagnosed with a low-vision condition called central serous retinopathy, and then that was followed by macular degeneration. I started losing my vision at a pretty early age—around age 50—and I’m now 73, so I’ve been living with this for a while, and Chris has been putting up with me for that long, too. That’s why we’re here; it’s because we’d like to help educate other people about how to live well with this disease or with any kind of low-vision disease.

MICHAEL BUCKLEY: Well, thanks, Dan. What was the hardest part of adapting to vision loss?

DAN ROBERTS: The fear of the unknown was the hardest thing—not knowing what to expect. And I’m always…I’m one who likes to plan ahead, and when you have something like, this you can’t plan ahead. You go through what we call chronic depression; it’s not like you have a death in the family and you grieve and then you learn to live with it, and everything goes from there. Having a disease like this, you continue to go through the process over and over again every time you lose vision. And so, not knowing what to…how to plan your life was probably the hardest thing that I had to go with, and that was the psychological impact, anyway. The functional impact wasn’t as bad, because I did have Chris as my caregiver, and she has helped me immensely to get through those rough times.

Loss of confidence, I think, is probably number two on the list. You suffer from that because you don’t feel like you’re going to be able to plan anything. You also start having to do things differently, and you have to learn new ways, and sometimes at this age, you don’t want to have to learn new things—you’re ready to settle in and retire and go on cruises the rest of your life. But that didn’t happen, and you lose your confidence, because it takes so much longer to do anything when you don’t have good vision that you feel like you’re just kind of worthless. I went through that, and Chris had to go through it with me, so I’ll let her chime in here.

MICHAEL BUCKLEY: So, Chris, what was the adjustment like for you?

CHRIS ROBERTS: Well, like he said, the adjustment is still ongoing, because it progresses. The adjustment was…he was always the strong one who always took care of me, and I went to him. Now, in some instances, we had to reverse that, but I got used to it. But it was…the fear that he was going to go completely blind, of course, but now we know that that’s not true. And it was just…waiting, what’s going to happen the next day, what’s he’s going to wake up and see or not see? That was the hardest part.

MICHAEL BUCKLEY: Chris, as kind of a follow-up question…did you feel like you and Dan made the changes together, or were there times that one of you was maybe a little ahead or a little behind the other in terms of these adjustments?

CHRIS ROBERTS: No, we went together, because we talked about it all the time. We had total openness in our conversations about what he was feeling and going through. He did hide some of it from me, but I knew better. [laughs] No, we did it together. We knew—and, of course, we’d been married a long time by then—so we knew each other’s feelings and moods, and if there was something wrong going on, then we could sense it, but we did the whole thing together.

MICHAEL BUCKLEY: Well, that really speaks to the…go ahead, Dan.

DAN ROBERTS: We dealt with it together, too. I believe being a teacher…in my soul I think I was born to be a teacher. I also like to teach. I like to learn, and then I like to pass along what I have learned. And so, we did a lot of studying. She and I both sat in on doctors’ meetings and conventions and that kind of thing to learn about this situation and what the research was doing and where we could find resources, and we did a lot of studying, and I share everything with her as far as what I learn, because I know it’s going to help her understand me, which helps me. So, it’s kind of a shared situation. And then, sharing with others…we, of course, have a large support group/network and a website presence, so that’s how we deal with it, by not just concentrating on our problems and living in the valleys between the mountains, I call them. There are…my grandmother used to say that there are…for every mountain, there’s a valley. You’re going to have to go through the valley to get to the mountain, and sometimes it’s hard to get to that mountain when you’re going through a depressive state, and so those were the times when Chris and I had to work together. She held me up as we approached the mountain, and we always do get to the mountains, eventually. So, it helps to have someone like that to help you reach that next mountain, and if you don’t have a spouse or a caregiver, then you need a support group. That’s what organizations like your organization, my organization, and several others are trying to do, help people get through this. It is an ongoing process.

MICHAEL BUCKLEY: Well, that’s great—very inspiring advice. Dan, Chris described you as kind of a strong, take-care-of-things type of person. Was there a transition to learning how to ask for help or admitting that something was difficult? Was that a transition for you to make?

CHRIS ROBERTS: He is still going through that. [laughing]

DAN ROBERTS: I think the light dawned on me when I was trying to fix a light switch early on. I usually am very handy and very quick about things like that—the simple things around the house. And I was working on this light switch, and I kept…I was having trouble seeing it. Dim light is a problem for me. I only had two hands, and I didn’t have good light, and that was causing me a lot of depressive…

CHRIS ROBERTS: You were frustrated.

DAN ROBERTS: …yeah, depression started entering in. I was losing my confidence. I was ready to just throw the whole thing in and forget it and have somebody come in and do that for me, and she simply came over and held a flashlight for me. And I said, “Wow, that helps.” And I realized, oh, maybe I can’t do everything by myself, and maybe I can’t do everything as quickly as possible. I’m going to need somebody to help me or at least tell me something easy like, “Get better light, for heaven’s sake. You’re not concentrating here.” And then to hold a screwdriver, or something like that. And then mainly give yourself the gift of time, and that is to realize…it’s fortunate that with macular degeneration, we are—most of us—elderly, and we have time. We are not fully employed anymore, so I had to realize, okay, I don’t have to hurry and get this light switch fixed. I can take my time, so I slowed down. She held the light. She held the tools, and we got the darn light switch fixed. We realized at that point…I think that was the moment when I realized, okay, I can do this, but I’ve got to make some adjustments. I like the phrase, “If you think your glass is half-empty or half-full,” well, my answer is to that is, if you think your glass is just half-full or if it’s half-empty, you just need get a smaller glass. Don’t expect so much, and become proactive. That’s a good way to handle this problem. Take care of it before it becomes a problem for you. Annual eye exams, improve your diet, keep moving, and help other people.

MICHAEL BUCKLEY: That’s great. So, Dan, you mentioned changing the light fixture. Were there other types of things around the house or out of the house that you had to change or, in some cases, no longer do?

DAN ROBERTS: Chris, do you want to take that?

CHRIS ROBERTS: Well, yeah. I don’t move the furniture as much as I used to. [Laugh] I love to move furniture. I don’t move my furniture anymore. Just little changes like that. I make sure things are in the same place in the refrigerator, where they’re easily found, and then the silverware drawer and just stuff like that. Make sure that everything is put back where it’s supposed to be, so it’s just easier for him to find. He can dig around and find it, but why make him go through that? Our kids have learned to do that, too, and our grandkids and everybody…keep things safe, don’t leave stuff in front of the stairs or on the stairs and that sort of thing. Just practical stuff that some of you normally wouldn’t think of everyday because you walk by it constantly. You just got to make sure things…and we know that his vision is worse in his left side, so don’t set anything over there, like his glass and different things like that. You learn as you go.

MICHAEL BUCKLEY: That is very helpful—very good specific tips there. I was wondering, Chris, when you think about becoming a caregiver, how did something like that change your outlook? What are some of the parts of being a caregiver that have been very rewarding for you, and what are some of the parts about being a caregiver that have been challenging?

CHRIS ROBERTS: Well, I was born into a family of caregivers, so I just kind of naturally fell into it. It’s a little more time consuming. You do have to adjust. I have to adjust my schedule sometimes around his. I do all of the driving, so if I go anywhere, I have to be back. He can’t meet me someplace if our plans change, or something; I have to come back and get him, which was not a big deal. It’s just one of those little things that you don’t think about. It really didn’t interfere in my life, because I’ve been fortunate. I never worked. I was always a housewife, mother, volunteer worker, and so I didn’t have a schedule that I had to change or a job I had to keep. Dan still works jobs, even though he is losing his vision, so always the provider. I have been able to be free to do that. I’ve had support from our kids; they all live here in town within 20 minutes of us. We’re doing fine. And we realize how it is difficult for some people who do not have that support system or do not have a 24/7 caregiver, and that’s another reason we’re trying to help them find different ways they can get the support and the help they need.

MICHAEL BUCKLEY: That’s great.

DAN ROBERTS: It wasn’t without friction. There are times when she has made mistakes that are understandable, that people will make. You want to tell them about the time you…

CHRIS ROBERTS: Yeah, we were driving along the street one time, and Dan said, “Watch out! There’s a deer.” I said, “What do you mean there’s a deer? You can’t see.” But he can. He’s got peripheral, and he does have some vision, and of course, that was the wrong thing to say. We’re getting over that. Now we can say it with jest and humor and just get through it. We can make jokes about it, but in the beginning, it was difficult. It was touchy, and it was hurtful and scary and the whole thing. That’s like in any situation, you got to be careful about what you say to your spouse. We all know that. [laugh]

DAN ROBERTS: There are also times when she will enable me, and I ask her, “Don’t enable me, because I am human, and I am going to start taking advantage of you.” There are times when you don’t want to help me as much as you wish you could because there’s a guilt factor with a caregiver. They feel guilty, and Chris has told me this. She feels guilty because she can’t do anything for me. This is the one thing she can’t do for me and that’s to make my vision better, and so, sometimes, she wants to make up for that by helping too much. And I have to tell her not to do that, because I know what’s going to happen. I am going to start taking advantage of her, and that wouldn’t be fair.

CHRIS ROBERTS: [Laughter] So that’s the rub.

MICHAEL BUCKLEY: So, Chris, with these roles that you serve around your house and your family, how do you make sure that you take care of yourself, so you are able to be a good caregiver?

CHRIS ROBERTS: Oh, that’s not a problem. [Laughter] I do craftwork, and I take time to do things. Dan, I know he’s okay with me, but he’s the person that likes to go on his own, and he works all the time on the computer working with his support group and different things in his projects, and I have plenty of time then to take care of myself. I leave, I go out, and I do things, and I go shopping because he’s okay alone. It’s just his eyes that are the problem. We are working on that, so I make time for myself, because I know that. Because sometimes I can get…it just beats you down, and you’re just so tired, you can’t do anything, so you got to be careful so that you don’t let that happen. I’ve done that with caregiving for other people for other reasons, and I can see what can happen.

MICHAEL BUCKLEY: It’s good; it’s a valuable approach.

CHRIS ROBERTS: And it’s not selfish. It’s not selfish. It really isn’t. It’s like keeping yourself healthy to take care of whatever, if it’s your children or someone who’s sick or whatever. You’ve got to take care of yourself.

MICHAEL BUCKLEY: I certainly agree. We have a couple of questions from our listeners for you. One, we have a question about diet. I guess for Dan and Chris, this will probably go a couple of different directions. I know that there are certain foods that are better for eye health, and there is also the purchasing and the preparation for foods, so I guess you can take the question as broadly or narrowly as you like, but has your diet changed as a result of low vision?

DAN ROBERTS: I was fortunate in a way—a blessing in disguise—to also be diagnosed with type 2 diabetes about 10 years ago, and so I had to change my diet. That was also benefitting my eyes, so I was forced for two reasons to change my diet. The one thing we preach that I don’t always follow, of course. I love hamburgers, but we need to eat better. As far as antioxidant vegetables and fruits and the good carotenoid vegetables, the yellow ones. All of those are good for our eyes. We need to not…we need to work on our weight. I just lost recently 15 pounds, and I’m feeling terrific. Those are things that are going to help the vision as well as the general physical condition. Those are important things. Of course, there are supplements, but usually those are only going to help you in the earlier stage development of macular degeneration, and that’s the AREDS 2 formula, which is excellent for slowing down the progression. Once you’ve lost that vision though, a lot of doctors will say, “Well, you’re not going to get any worse. You’ve reached the maximum now—the loss of central vision. So, those supplements aren’t going to slow down the progression because it’s not progressing anymore.” That’s a point at which many people do reach; not all of them—only about 50 percent of people reach that point where they have total loss of central vision. So, nutrients are good because we don’t eat well, and that’s what I do. I told my doctor, “Don’t expect me to do a lot of exercising. I’m just not that kind of guy.” He said, “Okay. I am going to get you a pill that’s going to watch your triglycerides for you.” I break the rules sometimes and ask for that kind of help, simply because I also want to enjoy my food, and I know that there’s a lot of people that do. But there are ways around it. If you exercise, you can pretty well eat what you want and stay healthy.

MICHAEL BUCKLEY: Another question that’s come on for Dan and Chris is driving. I know, Chris, you mentioned that you do the driving. Was there a transition to that, and if so, how did that go?

CHRIS ROBERTS: The only transition was he used to drive all the time when we were together in the car, and now I drive all the time. He’s a terrible backseat driver. Because his one eye is worse than the other, so he has a depth perception problem, and he’s always yelling at me to stop like “Why didn’t you stop earlier?” when I was just fine, because he’s perceiving things differently than they are. We’ve had a few rounds about that, and finally, I just told him to be quiet and to let me drive. We still once in a while have something, but we know it’s coming; we know the situation is there, and, it’s okay. And, of course, it frustrated him that he couldn’t drive. That takes away your independence, and he has to depend on me to take him somewhere or do something. That can be frustrating, but it is what it is, and you take it day by day and one situation at a time, and you deal with it. You get through it.

DAN ROBERTS: My turnaround moment there was when I was driving my granddaughter home from a movie, and she was in the front seat with me.

CHRIS ROBERTS: In the beginning.

DAN ROBERTS: Yes, that was back many, many years ago. And I started to pull out from an intersection, and she screamed. And I hit the brake, and a huge truck pulled in front of me. I didn’t see that thing coming. It came from my left. We would have been right in front of that truck, and I drove about 30 miles an hour the rest of the way home. It was dim light, by the way. It was evening, or even nighttime, if I remember. That’s when I said, “Okay, I am not driving with anybody else in the car with me if I even drive at all.” I am very happy to let Chris do it, because that was too close for comfort.

MICHAEL BUCKLEY: I understand that is a very intense situation. So our caller…the listener who asked about driving was also wondering, Dan, in you support group, are there devices or telescopic lenses or anything that might help someone with their driving, or is it just not something that can be addressed in that manner?

DAN ROBERTS: There is an extraordinary amount of optical and non-optical devices out there, and also electronic technology. Unfortunately, the cost of them, especially if they have lenses in them like magnifying glasses or electronic magnifiers, is very high, and Medicare doesn’t cover that because an old mistake that they made years ago when Medicare started reimbursing. They said they wouldn’t reimburse anything with lenses in it, and they meant glasses. Well, that’s still hanging on. That’s still in the statute, and so now even magnifiers aren’t covered. And so, we have a lot of people who cannot afford these devices, and that’s a huge issue right now. It’s one that we have lobbied Washington a couple of times. There have been two bills in Congress that haven’t gone any further in the last decade to correct that, and of course, the question is always asked, “Where are we going to get the money to reimburse that?” Well, there is money. They are always willing to move money from somewhere to help with what they really need, so we need to keep pressing for Medicare reimbursement of low-vision devices. But they are very much available. I’ve got a website with Prevent Blindness. There’s a whole section of links to all of these devices, virtually all of them, both electronic and nonelectronic devices that people can get from the company, so they are there. Paying for them is the next issue.

MICHAEL BUCKLEY: That’s good to know. Chris and Dan, I want to go back a minute. You mentioned your grandkids. How does vision loss impact the time you spend with them? How do you explain vision loss to your grandkids? Are there questions or concerns that they ask about to the two of you?

CHRIS ROBERTS: What’s funny is our first grandchild was born because he was diagnosed, and we thought he was going to go completely blind, so our son and his wife hurried up and got pregnant. I thought, “That was…sure you did, uh huh.” [Laughter] Because they weren’t married at the time, I said, “Right, uh huh.” But anyway, no, the kids have grown up with it, and they know that Grandpa has trouble seeing, and they’re fine. They’re all older now. They’re off into college and whatever, so they’ve always been very supportive of it. It has made them very aware of other people who they notice might be having trouble seeing. They’re aware of that out in the public, and if somebody is having trouble, they offer to help reading something or they’ll get out of the way because they know they can’t see them. This is ironic—it really opens your eyes as to what’s on around you. And we’d spend time with them anyway, they all live right here, so that never made a difference at all. Sometimes they wished it would, but no, actually, we don’t. We are always happy to have them over. [Laugh]

DAN ROBERTS: As for explaining to them, a lot of times, the question they ask is, “How come you don’t look blind?” And of course, the sarcastic answer to that is, “Well, you don’t look stupid either.” [Laugh] But I’ve never actually said that to anybody. I am waiting for the moment. [Laughter] I do tell them, to answer your question, by way of demonstration, I’ll have them put their fist in front of their eyes about a foot away and say, “Now, try to see me,” and that’s pretty much what it is. Demonstration is the best way, then just giving them a simple explanation until they’re old enough to understand the physics of it if you wanted to get into that. But they do love to help, and that’s one way I’ve gotten to spend quality time with them, because they can feel like they can help me, so they hang around me to help. And I think that’s wonderful, even though that’s kind of playing the blind card; it’s nice to have them with me, and sometimes they are helping me unnecessarily, but it’s still nice to have them with me.

MICHAEL BUCKLEY: Some great experiences. We have a caller from New Jersey who wants to talk a little bit about…would like to hear what you do for reading. Are there books on tape, or are there assistive devices, or smartphone apps, or anything that can help you continue reading books, even with low vision?

DAN ROBERTS: Reading—actually reading—you can do with magnification. Unfortunately, you’re using your rod cells in the peripheral vision, and they’re not very good at seeing, and so, it’s a frustration to try to read if you don’t have any central vision loss, so we fortunately have reading machines now. We have an iPhone app that can read for you. It’s free. Seeing AI, it’s called, so anybody that has an iPhone, they don’t have to read now. They can just point their camera on their iPhone to a sign, and it will read it for them, so things like that are really valuable. Of course, there are the audio books and the talking-books program through the Library of Congress. A lot of people are signed up for that—there are about 100,000 folks on there. So, those who like to read and actually turn the pages, they can buy an electronic reader where they put the book underneath it, and they do have to turn the pages and hit the button for it to read to them, so they’re still actively reading. You do miss just being able to sit there and turn the pages and read a book—that’s just not possible—but we have to give up a lot of things as we go through life. like turning somersaults, taking two stairs at a time…these are things we realize, as we get older, that we just cannot do anymore. And I am afraid this is one of those things that we just have to admit, “Okay, I’ve got to find a way to work around this.”

MICHAEL BUCKLEY: That’s very understandable. I know that we missed earlier that there’s going to be a new publication available for safety around the house for families impacted by low vision. Dan and Chris, your organization, MD Support, and BrightFocus were able to partner on this. Do you have sort of general advice for around the house in terms of lighting and other issues that are helpful?

DAN ROBERTS: That’s a huge topic that deserves a whole other Chat session. Have you had a Chat session on the…?

MICHAEL BUCKLEY: We’ve addressed it on and off in the past. I was just wondering in your experience what’s been most helpful around the house?

DAN ROBERTS: My experience is, like Chris said a minute ago, that having everything in its place and a place for everything is probably the best benefit, because even a person who has sight is using their memory more than they are using their eyes, as far as helping and doing things around the house. They don’t have to look at everything they do, and so…the kit that you mentioned offers lots of suggestions. There are several publications out there. I’ve got one, actually. It’s called the Self-Help Guide to Nonvisual Skills, and that’s a collection of tips and ideas from patients and professionals that can be obtained online and in large print. It’s free from lowvision.preventblindness.org. I am Chief Editor for that organization. So books like that are out there to help. I can sit here all day and list things like avoid scatter rugs, don’t buy glass-top tables, paint your step edges white. There are a hundred things that we could go on and on forever, which I won’t do, that you can find in these publications.

MICHAEL BUCKLEY: Great. That sounds good.

DAN ROBERTS: I don’t want to leave out the low-vision rehabilitation aspect. That is exactly what low-vision rehabilitation is for. You work with an occupational therapist, or a CLDT, or some therapist who’s trained in low vision and can introduce patients to these tips and tricks for living well and improving their environment to make living actually possible in cases where they maybe didn’t think it was possible, like identifying colors and separating socks and that kind of thing that you don’t have to give up. There are ways to do these things.

CHRIS ROBERTS: You could also have your caregiver try, like, making a sandwich with their eyes shut. And it is possible—but you don’t think about it—but if your eyes are shut and you do, then you realize what they are going to need enabled to do that themselves.

MICHAEL BUCKLEY: That’s great. That’s a pretty challenging way to learn their experience.

CHRIS ROBERTS: Walk around the house with your eyes closed. Just try it and see what problems you run into and where you can…it will help with some things and give you an idea.

MICHAEL BUCKLEY: Speaking of around the house, Chris and Dan, you live in the Midwest, and it seems like year round there’s some pretty intense weather and storms that come across your state. How do you prepare, logistically and emotionally, for extreme weather when your household is impacted by low vision?

CHRIS ROBERTS: When you’re preparing for a tornado, you just…we’ve grown up with this all of our lives, there is no difference in the emotion or the preparation whether you can see or can’t see. You go to the basement, and you get in your safe spot and you grab your phone. Right now, we grab iPhones, and we have a TV down there, so if the power is on or whatever, we watch the weather, and you just sit there and you wait it out. That’s what you do with tornadoes. There’s not a lot of preparation that you can make, because it is either here or it’s not…If you prepare a little bit ahead of time…if you want lots to eat when you’re down there, you know, take that earlier, and think maybe there will be a tornado. This is a last minute-type thing, and the emotion is the same as it always was: “I hope it doesn’t come here.” That doesn’t change much. You still just do the same thing that you always did.

DAN ROBERTS: We also have rough winters, and that’s when it’s helpful if Chris would walk ahead of me and warn me of the ice spots. Even visual people don’t see those sometimes, so she is always warning me of what’s ahead, and I appreciate that.

MICHAEL BUCKLEY: We have time for a couple of more questions. Dan, I was wondering. Your support group, what would you say to people that maybe have some reservations about becoming part of a support group or someone that is sort of thinking that through? What would you say to a person like that?

DAN ROBERTS: I have 210 support groups, which I provide programs for through the internet, and most of them don’t call it their support group: They call it their information group. I think that maybe that is what we ought to be calling it. Once people have received support from a support group—when they get over the emotional aspects and learn the tricks—a lot of times they don’t return to the support group, and the facilitators of these groups will mention that to me and say, “Well, I’ve lost membership.” And I’d say, “Is that because you gave them what they needed? If so, congratulations. But are you continuing to give them information? That’s what they keep coming back for.” So, every one of my support groups gets information newly every month through a newsletter. And that’s why they keep returning, because they are going to hear now, so they don’t feel left out. They know that there’s not something out there that they have not heard about. That’s the greatest fear—that the cure is going to come, and they are not going to know. They’ll keep coming back if they’re getting information.

MICHAEL BUCKLEY: I think that is good advice. We have a question from someone who’s wondering, Dan, do you have blurriness that comes with AMD? And if so, do you have any advice for people who experience blurriness?

DAN ROBERTS: Blurriness can be caused simply by a lens problem or a misshapen eyeball. It does not have to be the retina. However, if you have been diagnosed with AMD and it’s progressive, you will start with blurry vision and dim light difficulties. That’s the first thing to go, and then eventually, you’ll start losing color vision, because we are talking about the cone cells, which are responsible for all of that. Eventually, it will progress to geographic atrophy if you live long enough. It is a very slow progression, and geographic atrophy is an advanced form of dry macular degeneration, where you actually have blind spots, and—again, if you live long enough—those blind spots are going to combine and you’ll lose totally 35 percent of your visual field, and that’s right there in the middle where you read and drive and recognize faces. You will never go blind, but you will lose the details, and that’s where we have the devices and the workarounds that can get you through that. We can do 99 percent of everything we do with our eyes—healthy eyes—we can do with our eyes shut, but we just don’t. We just need to learn how to do that at this age, which is difficult for some people to admit that they have to kind of go back to school to learn how to live again in a different way.

MICHAEL BUCKLEY: Dan and Chris, I really appreciate your being so generous with your time and open and honest about how you have addressed the changes in your life and some very specific tips for the audience. Any kind of last-minute words you want to say? Any big-picture advice for those impacted by low vision?

CHRIS ROBERTS: From the caregiver’s point of view, a caregiver would just like to have honesty from the person who has the vision problem so that we know what we’re doing, if we are doing it right or if we are doing it wrong or if we are doing too much or if we are doing too little. And then just work it out together what they need.

DAN ROBERTS: And along with that is communication. The person who’s affected should communicate their needs; otherwise, they are not going to be met. Caregivers cannot be mind readers, so communicate with them. If you don’t communicate with them, find somebody like BrightFocus to get your information from and to connect with other people. People need people, so I think communication is probably the big answer there. BrightFocus does an outstanding job of not only supporting people with Alzheimer’s and macular degeneration, and—is it Parkinson’s disease?

MICHAEL BUCKLEY: Glaucoma.

DAN ROBERTS: Glaucoma. I’m sorry. But also contributes very much to research, so it’s a very good organization. It’s fulfilling both of those needs, and so I hope that people will contribute.

MICHAEL BUCKLEY: Thank you, Dan. That’s very kind of you. Again, we really appreciate the work you’ve done with your organization, MD Support, and to you and Chris for being so generous with your time. Both of you demonstrated first-hand that the power of good clear communication and honesty—I think you’ve been very helpful to our audience today. On behalf of the BrightFocus Foundation, thanks for being with us today.

Useful Resources and Key Terms

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

This content was first posted on: July 24, 2019
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