Meeting the Challenges of Macular Degeneration: A Story of Hope

BrightFocus Foundation
"Meeting the Challenges of Macular Degeneration:
A Story of Hope"
June 29, 2016
Transcript of Teleconference with Dan Dunbar
1:00–2:00 p.m. EDT

Please note: This Chat was edited for clarity and brevity.

MICHAEL BUCKLEY: Hello, I am Michael Buckley with the BrightFocus Foundation. Welcome to today’s BrightFocus Chat, “Meeting the Challenges of Macular Degeneration: A Story of Hope.” Our speaker today is Dan Dunbar, and he’ll share his story about AMD with you. If this is your first time joining us for BrightFocus Chat, welcome. Let me take a moment to tell you about BrightFocus and what we will do today. BrightFocus funds some of the top scientists in the world. We support research all around the world that is trying to find cures for macular degeneration, glaucoma, and Alzheimer’s. We share the latest news from these scientists with families impacted by these diseases. We have a number of free publications and plenty of materials on our website, www.BrightFocus.org. The BrightFocus Chats are another way of sharing this information with families.

Now let’s turn to today’s guest, Dan Dunbar. Dan, thank you for joining us today. We asked you to be a speaker and we invited you today because we often get emails and phone calls from people like you—people who were diagnosed with AMD and then went through a difficult time looking for answers or looking for new treatments that are helpful for them. We’re going to explore some of those topics today, but Dan, I was wondering if you could just start from the beginning. Can you tell us a little bit about your life and your experiences, what you did and what you enjoyed doing before you were diagnosed with AMD?

DAN DUNBAR: Thank you, Michael, and good morning, everyone. AMD started with me back in the, almost the turn of 2000, and I was treated for it. They kept telling me that there was something on the horizon and just to hang in there, and I did that, and in about November of 2011, my retinologist called me and said they were all ready to go—that they [VisionCare Ophthalmic Technologies] got the FDA approval [for the Implantable Miniature Telescope, CentraSight] and you’re scheduled for your implant operation in a couple weeks! I didn’t have a whole lot of preparation for it, but I had a very fine retinologist, and they assigned me a team of optometrists and optical therapists, and of course the surgeon was very good. That team gave me the instructions that I needed and explained what was going on, what happened, and what would happen, and post-op. It was all very good because it was thorough. I really didn’t have too many questions about it.

I should explain that I’m an engineer by trade, so I look at things differently than most people. Everything has to have an explanation. The operation went on and I was awake the whole time, although it didn’t have much bearing because the implant was put in my left eye. My right eye was covered with something. The other one, when they removed the lens, it just became white and shadows and things like that. There was no pain, there was no discomfort. It took about an hour and a half, something like that. I think I was the second one in the U.S. to have this implant after the FDA approved it.

So, we get all done and they put a patch over my eye and I left the hospital and I was treated in outpatient. We drove home, and a couple hours later I took the patch off and I could see! Sort of. I couldn’t see very well because the eye was highly dilated. That just lets light in. I didn’t realize there was so much open tissue around the lens, but there is, and you get lots of light and you can’t do much with it. That went on in my case for about two-and-a-half months because they were very concerned about keeping the iris back away from the telescope, and so they kept me dilated. Nowadays, I understand that dilation is kept on for about a month, 4 weeks, something like that.

So the point I want to make is that you can’t really use the telescope during that period. There’s just too much stuff coming through that you can’t distinguish what is just because of the telescope and what is just the aftermath of the surgery.

MICHAEL BUCKLEY: I’d love to, in a moment, to hear more details about it. I was wondering if we could briefly go back to the initial diagnosis, because I think your experience might be very helpful to people on the call. What made you first realize you needed to see an eye doctor?

DAN DUNBAR: I had spots in my eye. I couldn’t see well straight on—and it was a very slow process, by the way. It isn’t something that happens overnight. I had wet [AMD], although I didn’t know that’s what they call it at the time. It bled onto the retina. It occurred in both eyes, but it occurred in slightly different places. It was very distracting and also creates significant distortion in your vision. They spent quite a bit of time trying to get my eyes dried out, and in those years, they didn’t have the medicines that they have now. Basically, I had to work with a medicine called Macugen, which really didn’t really curtail the bleeding.

MICHAEL BUCKLEY: During the time you’re going through this, what was your state of mind? Did you ever go through the “why me” or anything like that?

DAN DUNBAR: No, not really, no. I don’t think I was ever what you could call depressed or ever felt sorry for myself. It was just kind of one of those things that happened. I shot enough rockets in the world to know you don’t always control your destiny. There’s just some unknown direction you want to go.

MICHAEL BUCKLEY: Do you have any advice for people who might be at the earlier stage of concerns? In your experience, what makes for a good visit with an eye care professional? What kind of questions, or how should one approach a visit to make it as helpful as possible?

DAN DUNBAR: First of all, I think an individual needs to be inspected by a qualified eye professional. A retinologist or that sort of thing. A retinologist looks through the back of the eye but also helps with the front of the eye too. A good eye professional, just to keep the status of what your eye condition is, because it changes. When all of this was going on for me, I ended up getting glaucoma because the eye professional didn’t really watch what was happening in the front of the eye. He was concerned about the back of the eye, so my pressures got out of whack, and there was some damage done. I think the thing that every individual should be aware of is when wetness occurs, you get a rosy view of life when you look out your eyes because you have blood, and you’re looking through the blood, and you have spots of rose color. It isn’t red, but it’s a color that wasn’t there before. If any of that ever happens, speak to a retinologist because there may be serious bleeding. The first thing that has to be done is to stop the bleeding. In my early days, the way they stopped the bleeding is with a laser, and that just means you kill the retina.

MICHAEL BUCKLEY: Mr. Dunbar, at what point did you learn about the CentraSight treatment—the implantable miniature telescope? Is it something you had heard about?

DAN DUNBAR: Not directly. What the retinologist and the other ophthalmologist people I was working with at the time said is, “There are some things going on. The FDA is approving this technique. It looks very promising, and you’re a candidate.” It took me quite some time to find out what I was a candidate for, but they said, “Well, it is a telescope.” I thought, “Oh! Well, that’s an interesting approach. Sure. Why not?” And then I got more information, and as I went along, they showed me how it was done and the size of it. The thing that is kind of disturbing is when you go visit your team and they start working with you to get you ready for the implant, they give you a test telescope. A trial telescope. It is about two and a half inches in diameter and about five inches long, and it weighs five pounds on a big stick, and you look at that thing, “There’s no way you can get that in my eye!” It is a good device. It does show the patient what he or she can expect when they have the implant. It shows that, and that’s very important.

MICHAEL BUCKLEY: What were some of the other questions you had or worries that you had when they told you they wanted to put a telescope in your eye?

DAN DUNBAR: Well, I just wondered, and I wanted to know whether it would stop everything. Would I have further degradation or not? And they said no, you shouldn’t as long as we have the retina dry. I think they were right in that sense, because I don’t think my retina has really changed very much. In fact, I feel like there’s even some improvement, but that’s probably just in my head. I don’t know if there’s really any improvement.

MICHAEL BUCKLEY: How can you tell that it works? You’re an engineer. How does this help somebody?

DAN DUNBAR: The operation—and I don’t mean to discourage anybody, but you remove the lens, your natural lens under your eye. They open the hole a little bit, and they put this device in. Like I said, the device is the size of a pea. It is fully compensated and fully coded too, so it works pretty well at night. You don’t get halos. I’ll get reflections off of the elements, but they’re way away from the center of vision so it doesn’t really bother you. It is really wonderful being able to ride in the car with my wife at night and look across the road at the oncoming traffic and be able to see the headlights clear and crisp rather than a big blur. It really is amazing. As far as how it works, it works just like a telescope. When you go to a sports show or something and you buy a telescope, and that’s basically what you have, and you have it implanted, which means it is a piece of your body, okay? So it is all located that way. You can turn your eye, and you move the telescope as you turn your eye just as you normally would do. The only thing is that a telescope reduces your vision from about 150–160 degrees down to about 20 or thereabouts. I don’t know the exact number, but it is approximately 20. That is adequate. It is adequate for sitting in the front seat of a car on the highway, and I look straight ahead to the lane ahead, like number one or number two lane, and I can see both lanes on the other side of the freeway plus the ones on the right without having to move my eye. I see that about maybe 200 feet ahead of the car. So yeah, it works!

MICHAEL BUCKLEY: Did you have to have any type or physical or occupational therapy to be able to use this? What did they do? Tell us a little bit about that. Recovery…

DAN DUNBAR: Sure. They started me with a patch. They had me get an eye patch and put the patch over the eye that they were going to put the implant in. This is before there was any operation. They had me walk around, walk outside. They wanted to make sure I didn’t do anything stupid like walk into the street. They wanted me to get experience with navigating around with a real old eye, the remaining eye, and using the peripheral vision, which in my case is pretty darn good. It doesn’t see squat in the center, but around it has pretty good vision. That’s some training that you learn early on before the operation.

They have you work with the test telescope. The main thing initially that they had me do is that they had me work with the eye patch to learn how to use, in my case, the right eye for my peripheral vision. Then the implant is put in, and once the dilation is pulled off, then you can begin to really use the telescope, and you start working with it. Mainly, first of all, to get a single vision, because you have two visions: you have a big one, which is close, and you have the regular one, which is probably distorted, but it’s a normal experience of distance, let’s put it that way.

What any individual sees is an experience. It’s not physical. It’s what the mind has resolved as “normal,” okay? So you have that, and then you start working with it. They don’t really do much early, because you have stitches in the eye, and there’s a lot of astigmatism, so you can’t do a whole lot of things. Those extra stitches are removed, and the eye settles out, and then the optometrist—and they make some measurements and fit distance glasses to correct distance and basically optimize the old eye and make it as good as it can be. There are some surface-level corrections, because it’s not a perfect location—the eye isn’t perfect.

Let me do one more thing. They give you another pair of glasses that allow you to see close because, remember, you have a 3-power telescope in your eye, and if you try to look close, like read a book with a 3-power telescope, you’re not going to see anything. They have to then uncorrect your telescope so that you can see close. In my case, that means a focal point about a foot away from my nose. That’s what you start with.

Then you can start your exercises, and they give you exercises to do because you first—the first thing you have to remember, the patient has spent some amount of time not being able to see directly in front of the eye because central vision is gone. There’s nothing there to see. The person can walk up to the patient and you talk to him, he’s not going to look at you or she’s not going to look at you. They’re going to look at some angle, whatever the mind has discovered is the best optimum angle that they eye can be set at and to give you the equivalent of decent forward vision. You need to understand that because that’s really important, because now you have a lens that helps you see directly in front of you. The whole retina is used as your central vision now. The mind has to learn how to put all of those elements together and say, “Oh! Okay!”

MICHAEL BUCKLEY: So Dan, we have a couple of questions from people who are wondering about cataracts. Did you have cataract surgery before this?

DAN DUNBAR: No. I understand that they’re not qualified yet to put the lens into an eye that’s had a cataracts surgery. They are working on it. I personally don’t see it as any real problem; it’s just that you have to get through the FDA with this alternative. I think that’s the issue. You should check because they know the details of that. I don’t. So far, you can’t have cataracts in the eye that you’re going to have the implant in.

MICHAEL BUCKLEY: Related to that, Mary from New Jersey is wondering about if the telescope works for people who have retinitis pigmentosa?

DAN DUNBAR: I have no idea what that is! Boy, I don’t know.

MICHAEL BUCKLEY: That’s okay. Well, it certainly sounds like people should talk to their eye care professional.

DAN DUNBAR: That’s why someone is usually assigned a team of doctors—a retina specialist, a surgeon, an optometrist, and a physical therapist. They come and they examine the patient, and they can make that determination.

MICHAEL BUCKLEY: Let’s get back to your own experience. It seems like your life is really—you know, you made some big changes. Are there any activities or any new hobbies you’ve taken up?

DAN DUNBAR: No, old hobbies I gave up because I couldn’t do them anymore. I was a model train enthusiast, and I couldn’t see the cars enough to do anything, so I gave them up.

Now I can see. I can see where to put what cars where. Yeah, it’s great. And the other thing that’s very important to me—I was never a top-notch skier, but I really enjoyed it, and I pretty much had to give it up because I couldn’t see where I was going. I don’t know what really made it a technical major improvement, but my vision was pretty fair out to about 50 feet. Beyond that was really questionable what I was seeing. Plus I had a lot of problems seeing things that physically weren’t there. There is an explanation to that. It’s some kind of syndrome, but it does happen to people who have low vision and because your mind is active, your mind does all kinds of crazy things for you, some of which you like and some of which you don’t. It’s not uncommon for a person with low vision to have funny visions. I had cars come off the freeway when we were on the freeway, rise up, and go over a bridge. It’s not possible, but that’s what I saw before I had a telescope. I don’t have that problem anymore because I don’t have low vision like I had before. Those are some of the issues that you have to be aware of.

Now I’m going to get back to the physical therapy and training, because it is important because of what I explained: The AMD causes the loss of sight over a long period of time, and your mind is working all the time trying to compensate for this loss, and it ends up with a control of your eyes that is not optimum, so you put the telescope in the eye, and now the mind says, “Oh, I want to see Charlie over there.” I look at 20 degrees up or 5 degrees up or left or right—it doesn’t matter whether the mind is confused. The mind doesn’t tell the telescope what it wants to see. For years, it hasn’t been able to do that anyway.

So now you have to train your mind to do it correctly, and that’s where the physical therapist comes in. They get several exercises, and you put them on the wall, and you do your exercises, and you go outside and you check moving things. Scanning sometimes is a problem. You have to remember that the telescope is 3-power, so every motion of the eye that is normal in the old eye, with the telescope, your vision moves three times the angle. So you have to be careful. You get jitter problems because you’re used to moving your eye a certain way. Now, if you do it that way, it’s three times more than what you had experienced before because that’s the optics. You have to get used to those things, and that’s what the physical therapist does. Yeah, it is a big change, but it isn’t something that is insurmountable by any means. You just have to make your mind up, and you go do it, and you do your exercise. It is like any kind of training—you have to keep doing it until you’ve got it.

MICHAEL BUCKLEY: Carmen from Florida is wondering if you have any discomfort now that you have this device in your eye.

DAN DUNBAR: I don’t even notice that it’s there. It doesn’t feel any different. The eye isn’t heavier, and it doesn’t move any slower or anything else. I don’t have any more irritation. In fact, I have less irritation in that eye than I did in my old eye. It’s still subject to getting dust and dirt in it, things like that. It’s sort of like your normal eye. It’s funny that there’s no feeling that that thing is there. It’s no different than your regular eye.

MICHAEL BUCKLEY: We have a question related to the IMT. Alice from Maryland is wondering if this is something insurance or Medicare covers.

DAN DUNBAR: I don’t really want to speak to that too much. I’ll tell you my experience, and Medicare and the government is constantly changing things, so what happened to me is not necessarily what is happening now. What happened to me was Medicare took care of everything except—I think there was a $100.00 charge for something that went out, but it paid for the surgery. It paid for any of the post-surgery support. It paid for the optometrist to make measurements and follow up. And by the way, in my case, the optometrist was my technical advisor, because I’d get these funny things that I didn’t understand why, and I’d call her and she’d explain to me. Then you have the physical therapist, and there’s a certain amount of time given by each of those, and it was really at no charge. That’s why I want to volunteer and help things because I have a lot people—there’s a lot of tax payers I’m sure I owe money to.

MICHAEL BUCKLEY: In terms of IMT, you’ve had such great experiences. What advice would you give to younger generations? Maybe the children of people who are starting to have low vision diseases such as macular degeneration. Any advice you would give to children of people who are entering into these types of medical experiences? In terms of caregiving or questions they should ask, what would you say to younger generations?

DAN DUNBAR: It depends upon the stage of the disease, but I would think, in my case—well, let me give you an example. Skiing—I like to ski, and I usually ski with my older son, and he was forever coming up to me and saying, “Why didn’t you turn back there at that junction and go where I told you to go?” And the answer to his question was I didn’t see it! He would get frustrated with me, and here I am thinking I’m doing exactly what he told me. There’s some understanding. I think the younger people need to fully understand what the patient is going through because it’s such a slow disease that the person doesn’t ever understand the change. You don’t really know you’re not looking right or you can’t resolve things. You might be seeing stuff that’s not there and that looks funny to people and you kind of worry about them. That’s something I think the younger people need to understand, is what that person is going through and what their abilities really are and to help them. I had a very understanding wife, and I was with a doctor for quite a long time before I was allowed to have the implant, so the doctor kept me informed about what was going on, and that was helpful. So I think every individual no matter what the age needs to have a regular visual check-up and then follow it up.

MICHAEL BUCKLEY: Yeah, that’s great advice. I just want to tell our listeners that we have some materials that are about the point that Dan just mentioned about getting regular eye exams. These are all available free of charge on our website, BrightFocus.org, or at our phone number: (800) 437-2423. We have a free publication called “Essential Facts of Macular Degeneration.” We have a popular pamphlet, “Safety and the Older Driver,” and it helps families talk through some of these situations. The last one I want to mention is we have a nice, short, simple card that sits in your pocket or purse called “The Top Five Questions to Ask Your Eye Doctor,” and all of this information is available free of charge from BrightFocus.

Dan, I wanted to take that moment to mention it to our listeners because I think you’re exactly right about the gift of eyesight. Also, one more thing I want to mention for our listeners. We have a factsheet about the implantable telescope that you can get by calling us.

Just time for a couple more questions. Dan, if you don’t mind answering—one of our callers is wondering—how old were you when you had this procedure.

DAN DUNBAR: I think I was almost 81. At the time there was a restriction that you had to be over 75 to be able to receive the implant. Now it has changed, I believe, to 65. Right now I’m coming up on—next month I’ll be 85. I’m enjoying life, let me tell you, it’s great—I can see!

MICHAEL BUCKLEY: We have a question from Gaye—from your home state of California—she is asking, is the telescope ever used for dry MD, or is it just for wet MD? Can you tell us a little bit about the kind of macular this is used for?

DAN DUNBAR: Well, I’m going to have a hard time answering that. They will not implant the telescope if you have wet AMD. The reason for that is the thing is changing a lot, and so you really don’t know what to do with it. But they won’t do that—at least they didn’t for me. I had to have dry retinas, and they had to be dry for a period of several months. Turned out they were dry for several years because it took so long to get FDA to approve it, but nonetheless, they have that requirement.

The issue really is—AMD destroys central vision and that then affects a person’s ability to see, read, do a lot of things. The telescope then enables the whole retina, which probably has a lot of good retina tissue in it, including the bad stuff, and it enables that whole retina to be used as a central vision retina and it’s amazing. Once in a great while I—under certain lighting conditions, I can see the scar. I can see the defective retina. But most of the time I don’t see it. It isn’t in my vision. It’s sort of weird, like the scar is still there, so I should be able to see it, right? Well, that doesn’t happen. The mind has averaged out the information off the rest of the retina, and it has presented me with a very good set of vision. I have 20/50 right now, and that’s pretty good. That’s good enough. I can ski great. I can see the snow on the skis. And when I’m skiing, I don’t run into things. It’s great, you know?

MICHAEL BUCKLEY: Related to that, Colleen from Canada asks—is your eyesight good enough to use a computer or a smart phone?

DAN DUNBAR: Oh yes. I use it all the time. I am on my iMac every day for quite a few hours. I use a smart phone. It depends. In my case, if the font size is under 12, around 10, it gives me difficulty. I have to use a magnifier. That’s the resolution area for me. I’m on it for days!

There’s a little element I’d like to share with everyone. I work with QuickBooks a lot. I’ve worked with QuickBooks since they invented it. So I’m on QuickBooks, I’m online, calculations are being done somewhere in my computer, and one day it tells me it wants to update my program, and I said, “Okay, do it,” and then it gave me a sign that said, “Okay, you can open your program,” and when I opened it I got no image. Just a white screen. There was nothing there except my cursor, and I move the cursor around, and I thought, well, maybe the computer has died. I check the other programs and no, they’re fine. I just couldn’t get any image on the QuickBooks, so I called in to it and said, “Hey, what did you guys do?” And they said, “Nothing,” and they took a hold of my computer and told me my computer was working fine, and I thought, “How could that be?” because I couldn’t see any image at all on the screen.

They had me run some tests and told me if I move my cursor to a certain point in the screen, I should see a box with three items in it—a magnifying glass, a big plus sign, and that thing that looks like a gear, and the minute she said “gear,” the entire screen came instantly into view, and I said to Emily, “Hey, what did you do? I just got it,” and she said, “We didn’t do anything.”

So that’s caused review with other people, and what it is, is the mind is what gives you your vision. Not the eye. The eye is used to update the mind, but the memory of your mind is what you actually see. If you haven’t seen it before, it may present to you what the eye is telling it because it doesn’t know that that’s what is there.

You get managed vision. That’s my conclusion. You get managed vision. Once that happens, it’s okay. I never had another problem with QuickBooks. It always comes up and always looks great. It was new to experience that, but that’s a problem with low vision. When you have low vision, things like that happen.

MICHAEL BUCKLEY: I just want to send a very special thank you to Dan for sharing his story today. I want to thank everyone who has joined the call and who submitted questions.

If you’re interested in learning more about CentraSight or any of the publications we mentioned, call 1-800-437-2423. Also, about a week from now we’ll have a recording of this call on iTunes and Sound Cloud and a written transcript of the call on our website, www.BrightFocus.org.

Our next Chat topic will be “Expanding Your Low Vision Care Team” on July 27. That one is going to be 1 hour later than usual. That’s going to be at 2:00 p.m. EDT. That’s “Expanding Your Low Vision Care Team” on July 27, and we encourage you to stay on the line to register for that now. We’ll also be sending you a reminder email.

Once again, if you have any questions, stay on the line and we can help you. You can call BrightFocus any time at (800) 437-2423. Or visit us at www.BrightFocus.org.

Dan, I just want to thank you very much for being generous with your time. Your experiences have been very helpful and inspiring to all of us. Dan, thank you for what you’ve done. And to our audience, thank you for joining us today.  

BrightFocus Foundation: 1-800-437-2423 or visit us at www.brightfocus.org. Available resources include:

• Information on research funded by BrightFocus
• Amsler grid
• The Essential Facts of Macular Degeneration
• Safety and the Older Driver
• The Top Five Questions to Ask Your Eye Doctor
• Information on visual hallucinations (Charles Bonnet Syndrome)
• Factsheet about the implantable telescope

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.