Transcription excerpts from this episode
Welcome to MyMacDLife powered by the Support Site Foundation. This podcast is about macular degeneration and the devastating impact it has on millions of people and their families every single day, 365 days a year. Our mission is simple to bring hope, optimism, perspective and education to our listeners to tune in, buckle up and put your listening ears on. Here are your hosts Dawn Prall and Shawn Doyle.
Hello, everyone and welcome to my MacD life. I’m your co-host, Sean Doyle, professional speaker, trainer and book author, and I’m here today with my co-host the lovely and talented, the amazing, the incredible, the irreplaceable, Dawn Prall, the founder and executive director of the support site Foundation, and a visionary. Hey, Dawn.
Hey, Sean, how are you? Great, great. Hi, everyone. We’re happy you’ve joined us. We’re excited to bring you some great information, education and inspiration. We really want to make a difference in the life of people are suffering with MacD, and we call it My MacD Life.
We’ve got Dr. Timothy Murray, who’s a leading retina specialist, and how often do you get a chance to actually talk to the doctor, he’s going to give a lot of great information about the disease of MacD plus is also going to give people some tips about things like what are three things you should ask your doctor. And I think that’s so important. So that’s really exciting.
We also have some ideas about maintaining independence with MacD, we have some great stuff from Vispero. They’re talking about some of the incredible Assistive Technology that they have to make your life easier and better.
Dawn, you know, something I was really thinking about this week.
How does someone maintain hope? When they have MacD? How does families maintain hope when their family members have MacD? So what are your thoughts about that? I got a lot of thoughts about it. But I was just wondering, you know, being in this space for so long, what are your thoughts about how does somebody maintain hope when they have macular degeneration?
Yeah, I think it’s this is a constant thread, you know, living with a disease that robs you of your precious sight. Every day, every day, right?
You get up in the morning, you’re like, you can’t just go Oh, that was yesterday. It’s like, it’s Monday. It’s Tuesday. It’s Wednesday. It’s daily. And every task that you do, you’re reminded of this disease. So it’s just, you know, people listening out there, what do you think they can do to maintain hope? or build hope or increase hope? Well, first of all, I
In the years that I’ve been doing this and interacting with thousands of people across the country who either suffer from macular degeneration—or I should say to live with it—and/or their family or caregivers. It affects the entire family and your whole your life.
There are a lot of brilliant researchers who are also working every day, relentlessly to discover new treatments, cures, new medications.
Because of the work of the Support Site Foundation and others, we’re all about science these days. And the process of discovery has happened. There’s a lot more that we know about what the disease is. There’s a lot more we know about what causes it. There’s a lot more we know about how it acts in the body. So, all of those things add up over time to discoveries. For example, Shawn, wet macular degeneration, which is what 15 to 20% of people have, there are treatments for that called anti-VEGF. And more and more treatments are on the market now to help people.
There’s a lot more emphasis on research and discovery. And with dry macular degeneration, which is what 80 to 85% of people have right now, there’s really nothing from a medical kind of medicine standpoint that people can do. That’s vitamins, it’s eating right, it’s healthy lifestyle, it’s environmental, things like that. But I will tell you, There’s a lot on the horizon.
Thank you. Well, Dr. Murray, thanks for being on the MyMacDLife show. And welcome.
Why don’t we tell everybody a little bit about the American Society of Retina Specialist. Tell people kind of what’s that all about?
So, the American Society of retina specialist is an organization that includes virtually every retina specialist in the United States that also has international presence. So, we have members I think in about 50 other countries. But what’s exciting for me is everybody in the US is pretty much a member of this society.
That’s fantastic. And I’m also curious to know, what led you to be a retina specialist? Why did you pick eyes for example?
I was fascinated by medicine when I was younger, and we’re talking 13 and 14. I applied and got into Hopkins, and Johns Hopkins at that time had a program that lets you go to medical school and college together and allowed you to shorten the time. So, I did that. And, in my first year that I was in that program, I spent some time at the Wilmer Eye Institute at Johns Hopkins. And that was it for me. I love surgery, and endo-microsurgery for a retina specialist, I think is probably the most fascinating microsurgery that anyone does….And there’s a lot of technology in Retina-X, especially over the last 10 years. I think it’s an incredible field to be in it. I don’t think there’s any other field in medicine quite like retina for the retina specialist.
Congratulations. And it must be very rewarding to see the impact you’re having on so many lives.
You know, what I love about this is that you impact lives daily. So, the two things that I do, I’m a retina specialist, but I also do AI cancer treatments. And I think the two things that we fear the most based on some of the studies that have come out is we fear going blind, and we fear dying from cancer. So, I get to live in that space. And it sounds like it would be a bad space to live in. But because our treatments are so amazing, it’s incredible. I know that we change lives for our patients on a daily basis. So, that’s fantastic.
What is macular degeneration?
That’s a great question. First of all, the macula is the area that we do all of our fine vision work with. That’s where we see color. That’s where you read that really tiny print, you know, in the newspaper. That’s why you read the street signs on the highway as you’re driving at night. So that’s all the macula. It’s a pretty uniquely small part of the retina.
The retina is the tissue in the back of the eye. And it is incredibly thin. It’s kind of like a butterfly’s wing. So, when we talk about some of the surgeries we do, that’s how delicate that is. But that’s the area that has those rods and cones that take the light coming into our eyes that’s focused, and they break it into electrical impulses that go to our brain that we can see with. If the retina doesn’t work, nothing works. So that is like the key to vision for us. If the retina doesn’t work, everything else doesn’t matter.
So macular degeneration, as you can imagine, is degeneration of that special part of the retina called the macula. This is a disease that starts in your sixth and seventh decade. And it can increase over time. But what’s changed in the last decade is that we have tools now where I can look at your macula, as if it’s under a microscope in the laboratory with the precision to see your blood vessels, and almost even the small rods and consoles for vision. With that technology, you just sit in my office, we take a special type of picture called an optical coherence tomogram. And we can look at it.
Macular degeneration really occurs when abnormal blood vessels grow underneath the retina. The problem with abnormal blood vessels is they can leak fluid. And if the holes in the blood vessels are large enough, they can leak blood. Fluid and blood change your vision and can blind you.
What was remarkable is we developed an ability to treat the leaking of those new blood vessels. The doctor that developed this treatment out of Boston….developed something called Anti-VEGF, which is anti-vascular endothelial growth factor—a big name to say that there is a molecule that binds inside of the eye, and allows those abnormal blood vessels to stabilize, so they don’t leak, and they don’t bleed. And if they don’t leak, and they don’t bleed, Sean, you don’t lose your vision.
It’s amazing. That is incredible. So, what do you say causes macular degeneration?
The cause of macular degeneration is aging within the eye tissues that are predisposed to degeneration. What makes us at risk is that there’s these little dots underneath the retina called drusen. If you don’t have drusen, you don’t get age-related macular degeneration. The problem is many of us do have drusen. It may or may not lead to wet or, or neovascular, macular degeneration. We call it wet macular degeneration shrunk because it leaks. The vascular endothelial growth factor is what stimulates the new blood vessels to grow and leak. The biggest problem we’ve seen is trying to identify who’s at risk and who’s not.
One of the things we know is that if you have an exam early, say in your late 40s, even though you may not have the wet macular degeneration, we can look for the drusen. And if you have drusen, we can say maybe you should come in every six months. And here’s a test you can do at home to follow your vision every day. Then we can look at you and say maybe there’s some risk factors that you should think about taking care of. One thing we know is the biggest risk for this is smoking. We know smoking is bad for cancer. It’s bad for your heart. It’s bad for stroke, but it actually is the single greatest risk for wet macular degeneration.
At the Site Foundation, we’re about being the champion of the patient. So, what do you recommend to patients about how they need to talk to the retina specialist about their disease, Dr. Murray?
Well, first of all, I’d love my patients to know what a retina specialist. There are wonderful optometrists, and they’re wonderful ophthalmologists. But when you’re getting to the macula, you’ll want a retina specialist. That brings us back to one of the things I like that no matter where you live in the US, you can go to our site at asrs.org/ patients. You can see there’s a little bar that says, “Find My Retina Specialist.” What it will let you do is you can put your city, your zip code or a doctor’s name that you know, and it will give you that person’s contact information.
The good thing about retina specialty, or the bad thing for the patient, sometimes is you get to come back and see me again and again. And again. So I say, look, the next time you come back in, make sure you write all your questions out. I will never let you leave without me answering every one of your questions.
It’s a little crazy with his COVID-19 pandemic, but it’s good to have somebody with you. You’ll want somebody to hear what you’re being told who can come back and remind you that you heard this, I heard this, etc.
And you should never leave the doctor’s office without understanding a few basic things. What’s my diagnosis? What is my treatment plan? What do I need to do to make myself healthier? And when do I need to come back and see you again, and I tell my patients never leave without making your follow-up appointment?
The other thing is you need to find a doctor whose office is available to you. So, if you call the doctor’s office and no one speaks to you, that’s not cool. I think that’s important. And then also this is a condition that runs in families.
So, if your parents or one of your siblings had macular degeneration, you have a significantly higher risk. And we think it’s from the genetics of the disease. But what we also realize is that it’s complex genetics, so people have done some genetic testing. And this is not a simple disease. It’s not like where breast cancer has those BRCA1 and BRCA2 genes that you can go and get a blood test for. That doesn’t work for macular degeneration yet, but it probably will at some point in the future.
My big tips are, understand the condition that you have and what your role is in that condition. I think that the problem with MacD is that when it becomes this abnormal wet MacD, that’s the type we worry about. And you have to be really active to make sure you’re getting into your doctor’s office and what the retina specialist offers to be treated. And you also have to understand that your vision should be good. If you cover each eye and one of the eyes doesn’t have good vision, you’ll need to understand why. The other thing we’ve talked about is smoking and being healthy. We’ve mentioned the fact that you have to monitor the vision for changes. And you have to be committed to being engaged in this treatment. So, I think that the biggest thing is to know what to look for; who you need to see; and what your plan is to get good care. People that walk in and say, ‘I need to understand my disease so I can take care of myself with you, Dr. Murray,’ those are the patients that do the best. I’ll take care of anybody. But you have to be engaged.
If both of you are working together, you’re going to get a lot better results than if someone is passive and less engaged in their own health. Are there any new treatments down the road that can really give people hope for either a cure or some significant improvement in terms of treatment or medication?
How far we’ve come in 10 years is amazing but where we’re going in the next 10 years I think is going to be even more so. The way we treat MacD now is we give you an injection into the eye that puts the medicine right near the retina. That is amazing. And it sounds awful. But it’s really it’s really not. Well, if it gets great results, it gets great results. So, it’s worth it to do it.
Having said that, you have to come back to be reinjected and it has a lot of burden for the patient and their family, and even for their doctors. So, the future already has occurred in that there is the first example of a device that may allow you to get injected once every six months. The problem with it is yet to put it in in the operating room. But once it’s in, it’s great. The question is who should get it who shouldn’t. But that’s one advance where you go from injecting every six weeks to every six months. That’s a huge difference.
And then the second thing is that we’re looking at some of these gene therapies where we can inject a modified gene into your eye that can make the Anti-VEGF in your eye. Your eye can become a factory to make the medicine so once I’ve treated you maybe I don’t need to treat you ever again. That’s phenomenally exciting. It looks like at least preliminarily that there’s some really good hope for that. And the body would be treating itself. This way you put a gene into your body to make the molecule that we’ve been injecting into your eye.
The other thing is that device that I use in my office, there’s going to be a device like that you can have at home. So, you can use home monitoring. Maybe it will be instead of having to come to me to look at you and see if I need to give you another treatment. Maybe you just need to check your sight at home. It sends it to me at my office. You and I look at it together. And you don’t have to get in the car and come in and have your eyes dilated, and spend an hour and a half in my office. That’s another advancement that’s going to happen within the next two years.
Wow. Dr. Murray, that’s incredible. What can be done about connecting the dots for patients and caregivers, so that they really understand more about their disease and other resources like the Support Site Foundation?
Well, one of the things about MacD is you often get this when you’re much older, and it becomes much more difficult for you to integrate your heart doctor and your lung doctor and your diabetic doctor, your kidney doctor and your eye doctor. So, I think that having a support network, either with your family and friends or even with foundational support like you have. Or there are other places like Lighthouse for the Blind that can help. It’s for people that have limited vision in any capacity. And the better your vision is, the better you do. But I think that you want to have a good support group, I think you want to understand your condition. So, you have to ask your doctor questions. I’ll tell you, the one thing I’ll say is if you have someone that doesn’t feel like they understand their disease from their doctor, they need a new doctor. Get a second opinion.
That’s why having something like the support site foundation is so important. You’re a resource for them to call when they don’t think they can ask their doctor, and these conversations like what you and I are having today. Hopefully that touches a lot of people in a way that empowers them. So, I think those are the really key things that we’re looking for.
Tell us a little bit about your podcast and, and the goal and mission of that podcast.
Well, most of what we’re focused on is bringing advances of therapy and education to our doctors. The idea was let’s focus it on the patients. I think the more educational opportunities and the more information for our patients and their families and their caregivers, that’s what this is all about.
Learning to live with MacD is a challenge 365 days a year. So, what you have to do is you have to learn how to change the things that you do. Why? You already know why: Because you can’t see as well. And you want to make your life easier. We’re here to help you do that. The tips that we’re going to talk about in our shows, we hope are simple things that you can integrate into your life that are going to make it really big difference.
Number one, make what you want to see larger. So that really means magnification. Magnification is your friend when you have macular degeneration. And because MacD is progressive, your magnification is most likely going to change either over time or depending on what you’re reading. So here’s how it works. And your eye doctor might have told you this stuff. If they did, here’s a little refresher. And if they didn’t tell you, now you know relative distance magnification. So, what that means is that what you’re looking at is brought closer to the eye. In other words, sit closer to the TV. I’m sure there are a lot of you out there who do that, you don’t have the right magnification. So, you sit closer to that 55-inch screen. That’s called relative distance magnification, where you physically move closer to the object you’re trying to see, or you move the object closer to you.
Next relative size magnification. So that’s when the object is made larger. I know lots of you have large print books. Maybe you even have large print checks from your bank—which by the way if you don’t, you should order them, it’s a great idea. Or you bumped up your game: you went from a 28-inch screen and now you have the big 72-inch screen. That’s relative size magnification.
And then the last one I’m going to talk about, it’s called angular magnification. That’s a fancy word for hand magnifier like the good old-fashioned magnifying glass. Some of you might have a telescope that you clip on your glasses. Or hopefully a lot of you have electronic magnification, a device like a CCTV; or a portable electronic magnifier or a reader, that thing our friends at Vispero talk about. That’s your tip for the day. Think about it, use it… Make it easier for yourself. You deserve it!
Today, our Assistive Technology Vispero folks are going to be talking about a Compact 10
This device is you know, it’s a little bigger than like an iPad and it’s portable. Wow, it’s touchscreen. And it has all the important features like that you need when you have macular degeneration, and you want to read or you want to look at your computer to do basic things in your everyday life.
My name is Bill Kilroy. I’m the Vispero Senior Sales Director for the Northeast, and I’m joined by my colleague, Mike Woods, Strategic Accounts Manager for Education for Vispero.
Vispero is the world’s largest Assistive Technology for the visually impaired. Our field of specialty is Assistive Technology. And you might ask yourself, ‘what is Assistive Technology?’ Assistive Technology is any item piece of equipment software program, or product system that is used to increase maintain or improve the functional capabilities of a person with disabilities. That means serving people with our products who are blind or low vision. Throughout this podcast, we hope to highlight key products in our line that can enhance people’s lives. And we look forward to speaking with you.
Today we’re going to talk about the Compact 10, which is a Optelec product. It super excites me because it came out the beginning of this year and the neat thing is its 10-inch display. So, it’s a portable electronic video magnifier. And it’s a touchscreen. For those of you tech-savvy people out there that are used to using your cell phones and tablets that are touch accessible, this will fit into your needs very nicely.
It also adds in OCR capability, which is optical character recognition that allows you to scan text. So, you can actually scan in a full 8½ x 11-inch sheet of paper. This will quickly turn around and read it out loud to you. And you can save the documents that you scan. One thing that sets this unit apart is it sits on top of the text that you want it to read with a nice, angled stand…and has a flip out arm that allows you to view an entire page, zoom in and, say you need to fill out a document, write a check, you’re able to do that underneath this and see it clearly and enlarge it as much as you need. The magnification goes from .5 to 22x. And it has a rechargeable battery with four hours continuous use. This comes in at weighing just over two pounds. So super lightweight. You’ve got tons of different color selections for different contrasts. And again, once your eyes start to fatigue with reading on the screen, you can just tap a button and have this read it out loud to you.
This is a product that has generated a lot of buzz anywhere from the staff at Vispero to our channel partners, who are the people out there that typically dispense these products, as well as the end users. I think it is unique and innovative in the sense that here you have this collapsible almost tablet-like system that can literally go in a backpack very easily or be in a purse. Pull it out, open it up. You can read a document. You could also scan that document and with the innovative arm that telescopes out. With an additional camera, you can actually do a full-page scan, as well as a live camera view that gives you the ability to look at a document or form and sign that very easily.
The other thing I really like about it is you’ve got an easy and advanced mode. If you’re working with someone that maybe is a senior that’s not too tech savvy, they can just set it up for the easy mode, which gives them fewer options to pick and choose within the product. You can also purchase this with speech options or without. If you don’t need that scanning, there’s one of those available as well.
If you want to learn more about it, you’re welcome to visit our website at www.vispero.com. You can also call our customer service team at 1-800-444-4443.
For more information and key resources, visit myMacDlife.org. Please consider a donation to keep on mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcast. Until next time, keep living with hope.
* Note: All listed transcript timings and wording are approximations.