Getting the Most from Your Eye Doctor Appointments
Dr. Judy Box, a Hadley member living with macular degeneration, shares her tips for managing those important conversations with your eye doctor.
Hadley
Getting the Most Out of Your Eye Doctor Appointments
Presented by Ricky Enger
Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts. In this episode, we discuss strategies for successfully managing appointments with the eye doctor, and our guest is Judy Box. Welcome to the show, Judy.
Judy Box: Good morning.
Ricky Enger: So, delighted to have you here. We've had discussions on this show from the perspective of various eye specialists, like what kinds of eye conditions they treat and what you might expect during an exam, but what we haven't done yet is to talk about things from the perspective of the patient who's walking in and looking for answers and might be feeling a little bit vulnerable or uncertain about things. So, I'm delighted to have you here so that we can just kind of talk through some of those strategies that people might use to make sure that their needs are being met during appointments like this. Before we get into that, why don't you just tell us a bit about yourself, your background, and maybe a bit of your vision loss journey, if you're comfortable with that.
Judy Box: Sure. I grew up in Australia, rural Australia with 6,000 sheep on a farm that's still in the family for the fifth generation. Then went to boarding school, and then medical school in Melbourne, and came to the United States in 1972. Practiced medicine for 45 years, married twice, widowed first time, remarried six years ago, bunch of kids, step kids, grandkids, all the rest of it, enjoying life. I got macular degeneration about two years ago. My mother had it, so I had anticipated that that might be my future. And the symptoms first became very noticeable about two years ago. A year later, it went into shots, and I've been getting shots in both eyes now every month for a little over a year. So, there we go.
Ricky Enger: Like it or not, it sounds like you have had a number of experiences going to these eye appointments, whether accompanying your mother to them, and then certainly going yourself. So, as you are heading into an appointment like this, do you think it's a good idea to take someone with you, someone who could be an advocate, friend, family member, that kind of thing?
Judy Box: Yes. Yes, there is. But let me just phrase that a little bit. If you're going into an appointment with a doctor for a condition that's chronic and you already know what's going on, no, you don't need to take someone with you. But a first appointment or something new, and particularly if you're feeling anxious about what the something new might be, yes, I really do recommend taking someone with you. And if you've got a family member or a friend who has a medical background and speaks some of the language the doctors are using, that's a huge help. Nurses are gold. If you have a daughter, a niece, or a neighbor who's a nurse, I really suggest that one.
Ricky Enger: And do you think people who come in with you, what purpose do they serve beyond just another set of ears? Are there other things that they can do during that appointment for you?
Judy Box: Yes. In fact, I go with neighbors to doctors sometimes, and what I do is just keep quiet. And then if there's something I don't understand, I ask the doctor to explain it to me, and then I can help the patient afterwards if there's something they don't understand. But we don't need the accompanying person to be butting in and being difficult and asking lots of questions. I think the appointment belongs to the patient, but the second pair of ears is really helpful for clarifying things. And sometimes you'll notice that the person you're with didn't understand. You recognize the puzzled look on their face, or they lean forward as though they didn't understand something that would be a prompt for the accompanying person to ask a clarifying question too.
Ricky Enger: Right. That makes sense. And it actually leads quite nicely into my next question, which is that sometimes these appointments are not very informative for whatever reason. Either the doctor is talking in a bunch of technical jargon that you don't get, or they're just saying very little and assuming a lot of knowledge on your part, or any number of things that can happen. How do you cope with feeling overwhelmed and having so many questions during an appointment like this? What are some strategies you can use?
Judy Box: It's a bit different if it's a first appointment, or if suddenly you've got something told to you that you weren't anticipating because you can't be ready for that. But let me talk more about what goes on perhaps in the next appointment. I wanted to know what does this diagnosis mean for me, and what can we do about it? Because all the jargon described to me what's going on behind the eye and blah, blah, blah, tends to be foreign to most people. And perhaps I'll stick with macular degeneration just as an example, but what I'm saying would apply to other people too. Well, the doctor I've got now was wonderful. He used language that I understood. And then when he got into the weeds, which is my language for he's getting into language I don't understand, he flipped to using common language. And I think it's important, there are times when he'll use a word and I'll say, "I don't know that word." So, he uses a different word. I think it's important to ask the doctor, "I'm sorry, that's a word I don't understand."
Ricky Enger: Right.
Judy Box: There's nothing wrong with that. They can then rephrase what they're describing. Then the important stuff we need, particularly in vision loss, is what do I expect for the rest of my life? In my situation, he said, "These shots should keep you with your vision the way it is now." I said, "Well, okay, I've adapted this far. I can live with that." Well, it turned out it didn't stay that way. It got much worse, and then it got better, and blah, blah, blah. But it's important to ask those questions because we have to plan life. Just being told, "Well, you've got this problem and it's going to affect your eyes for the rest of your life, doesn't tell you, am I going to be legally blind sometime? Should I learn now to use voiceover, so that I'm ready for it? And in fact, at that point, you've never even heard of voiceover. And a huge problem in this industry is there's no rehab. There's no good support one-on-one for people new to vision loss.
If I had a stroke, they'd have an occupational therapist in my house next week. But with vision loss, I'm cutting my fingers, my husband's promising to buy stock in Johnson and Johnson because we're going through so many band-aids, I can't see the screen on my iPhone. The doctors are of no help with that. They really aren't. Hadley is way more help with that, and Hadley now has a peer-to-peer program that I recommend people new to vision loss try and get involved with. Doctors aren't going to be much help with that.
Ricky Enger: Yeah, that's something incredibly common, unfortunately, that we hear, is you walk into the doctor's office, and they tell you what's going to happen or what they believe is going to happen, and then wish you luck and send you on your way.
Judy Box: Yeah.
Ricky Enger: It's not so helpful. So, it's essential that people find not just what has happened and understand the technical side of things, but then what do I do from a practical standpoint next?
Judy Box: I have a couple of other little things on that too. When I go back to the doctor, I have questions. I write them down and try and organize them in a way that I'm not asking five different questions, three of which are much the same. Try and make it simple.
Ricky Enger: Right.
Judy Box: I pay attention to the pace. Some days I go to see my doctor and I can tell he's super, super busy. The waiting room is packed. So that's the day when I might postpone my question to the next appointment. And remember, I see him every four weeks. So, if you see him once a year, it's a different story. Then the first thing I do when he comes in and says, "Good morning," I say, "Good morning. I have a couple of questions for you today," because that lets him know to budget a little bit of time for my questions rather than losing it now in chitchat. Now sometimes, he will just sit down, "Okay, let's have it." Other times, he's numbing the eye and he's coming back for the shots a little later. "I'll address that when I come back later." But giving him the warning that I want some time, I think is gold. Otherwise, you're at the end of an appointment. He's already got his brain on the next patient. "Oh, and by the way, I want you to explain X, Y, Z to me," that's not a good starter.
Ricky Enger: Yeah. What about the other people in the office? So, you might see a nurse or technician, and typically you might have a little more time with them than you do with the doctors. Where do they fit in? Are there things that they can do that maybe the doctor is not best suited for?
Judy Box: That varies widely. In family practice, the nurse gold. In my experience with the ophthalmology people, first, I see a technician who asks for medication changes, asks, "How's your vision going?" Checks the eye chart and puts drops in the eyes and checks for glaucoma. She's a technician. She's not going to know the answer to most of my questions. By all means, you can ask, but don't expect a whole lot. The next person in the pipeline, for me anyway, is the fellow or the girl who takes pictures of the back of my eye. And sometimes when I've asked them questions, I get the answer, "Oh, you're going to have to go over that with the doctor." Just this last week, I asked a question, and the technician not only took time to explain it to me, but he showed me on the pictures in a way that I understood what was going on, but that's the first time I've ever had that experience.
Then after that, the nurses come in and do the initial shots and some of the more significant eye drops. That's an opportunity to ask some questions. But because I have a good relationship with my doctor and we speak the same language now, I haven't asked many of those questions of the nurse. I asked the nurses more practical questions, and frankly, they don't know. They've never had a problem cutting their fingers because they can't see where their fingers are. So, they really have no clue, and they're embarrassed about that. And that's another time to recommend they tell people about Hadley. I haven't found a nurse yet get permission from the administration to do that. That's the most frustrating part about all of this.
Ricky Enger: Yes, indeed. And sometimes there's a lot frustrating about the whole situation, and in fact, maybe things just are not working with your doctor, and that can be problematic, especially if you are seeing a specialist and there aren't too many other options for you. But do you have thoughts about how to navigate this? How do you decide when you should go through switching to another doctor? And then if you do make that decision, that opens up a whole new can of worms. So how do you navigate that with the new doctor?
Judy Box: I did all of that. And let me just tell you my story because it's pretty poignant and pretty distressing. I was referred to a retina specialist, and the first thing I told him was I'd heard about this little gadget called Foresee that could help know when my macular had become wet. He ordered that for me. I had two weeks to get a baseline set up in the machine, and it was already too late. I had too many wavy lines already. When I went back to him the second time, he was very brusque. He spent all of two minutes. And as he left the room, I said, "Oh, by the way, Foresee couldn't get a baseline." And he said, without even turning around, he said, "Well, some people just need more practice and kept walking."
Ricky Enger: Wow.
Judy Box: I won't use the words that went through my brain at that time, but I thought, "You," fill in the blank, "you know I thought this was important to me. You know I'm worried about my eyes turning wet. This machine was supposed to help me, and now you're telling me I'm too stupid to spend more time with it?" So that was enough for me to switch to a different doctor in the same practice. My husband's first wife who died some years ago had an eye operation by a different doctor in that practice, and that woman was no better. My left eye has barely any vision left in it at all. Meanwhile, they recommended shots in both eyes, and I didn't know why. And so I said to her, "Why are we doing shots in the left eye?" "Well, if you don't want shots in the left eye, you don't have to."
I said, "No, I just want to know what the goal is doing shots in the left eye." "Well, I can tell you if this was my eye, I'd want shots in it." Now, that was only about the fourth round with this woman. So I decided, okay, I am done with this practice. And here's the important point here. This relationship with an ophthalmologist is the rest of my life, and I need to be comfortable with whoever I'm going see. So that's my story on why I switched. It so happened that a friend of mine was about to have a very dangerous eye operation with the doctor she'd been seeing for a long time, and she thought he walked on water. And her descriptions of his behavior and his relationship with her and all the rest of it were enough for me to figure out, "I'll try with this guy." And he happens to be at Ohio State University. He's very good, and I'm very satisfied there.
So that's my answer to that. Now, how do you go about finding a new one? The same way I did. Ask around if you know anybody. Ask your family doctor, your family doctor might know someone. Or if you were referred by a general ophthalmologist to a specialist, ask the general ophthalmologist or the nurse in the general ophthalmologist practice, "Can you recommend somebody else? I'm not liking what I'm getting from the place you sent me to first." There's no right way to do this. There's no guaranteed outcome because we're really talking about personalities. But those would be my suggestions.
Ricky Enger: And what about when you go to that appointment with the new doctor? It can be tempting maybe to tell your entire history or to just tell a little bit and let them read the rest. What do you do?
Judy Box: I don't think it helps to go into a new doctor badmouthing the last one. In fact, I don't even know if he asked me why I was switching, but if he had... Actually, I did. I said, "I wasn't comfortable there," and he named the practice. So, he must have had other people come to him who had come from that practice. Now over time, bit by bit, I've told him some of those stories just because they're relevant to a chitchat we are doing, but you don't gain much by badmouthing the last guy. Besides, this is, again, a personality thing, and it may be you are the one who's difficult.
Ricky Enger: Yes. So, when you are looking for a specialist or you're looking for just a number of people who you can interact with, who can talk about the medical side and maybe some of the practical side, what do you think about teaching hospitals? There are certainly more people that you deal with in a teaching hospital. Is that a good or a bad thing?
Judy Box: Neither. Teaching hospitals, the professors tend to be more up to date with the latest research. And if you're interested in getting into research protocols, you've got quicker access to that. But you can follow the Foundation Fighting Blindness too, and they'll let you know what research is going on. I'm not a fan of having the latest treatment. I never prescribe the latest drug to my patients. I've never taken the latest drug. I leave it on the market for a while and see how it really shakes out. I do trust that the specialists you're seeing are staying up to date in their specialty. I don't expect a retina specialist to know anything about hemorrhoids, but I do expect them to know about the retina. So, I don't think there's an advantage or disadvantage. I occasionally see a fellow. Ophthalmologists do medical school, then they do ophthalmology, then they do a fellowship, which is a specialty. And by the time the fellow is learning how to deal with my macular degeneration, he or she already is a qualified ophthalmologist.
So, I'm quite comfortable if occasionally, my doctors backed up and the fellow is giving me the shots. They know how to give shots. They're not green. So, you see more people. But frankly, in my conversations with the fellows, I tell them more than they tell me. I give them an earful about my frustrations, that the ophthalmologists don't know anything about how to live with these disabilities, and they listen. And some of them are very interested, and one even wanted to have me come in and teach fellows, but it never happened. I don't understand why these outfits just don't want to learn this stuff. I don't get it.
Ricky Enger: Yeah, it makes very little sense. And as I said at the beginning of the episode, it's a common thing that happens. People go in and it feels like a one-way communication. The doctor tells you what they deign to tell you, and they're not necessarily always interested in learning something from you, which is unfortunate.
Judy Box: Yeah. By the way, there is another thing to remember here. All my doctor can do is look at the pictures and determine how frequently I need the shots, and he can tell me what to expect from those shots. He can't predict accurately what's going to happen with the rest of my eyesight, and he really doesn't know the answers to how do you stop chopping your fingers? But I think it's important to understand the scope and the limited scope of what your doctor can do. Because when I first went in, I thought, well, this guy's the miracle worker. My friend said he was. And I was expecting him to be able to do things that he can't do. We don't know how to do those things yet. It's important to clarify that.
Ricky Enger: That's a great point. We've covered quite a lot, I think, but is there anything that we haven't touched on that really is important for somebody who is trying to get their needs met and successfully navigate these appointments and might be struggling a bit?
Judy Box: Yeah, I've got a couple of tips here. One of them is the use of the word hallucinations. Most of us see things that aren't there, and most of us know we are seeing something that's not there. Understand that that is a hallucination, and it has nothing to do with being crazy. I practiced psychiatry for 45 years, and I can tell you I am yet to see a patient who has hallucinations as part of a mental illness except PTSD. But one day, I was sitting at my desk, and I saw what looked to me like a bunch of snakes swimming around in a babbling brook running with milk. When I mentioned that to my ophthalmologist, he said, "Did you have a headache after that?" And I had to think about it for a minute. And I said, "Yeah, I did, a couple of Tylenol worth headache."
He said, "That's an ocular migraine." Okay. Well, I've talked to other friends who have had visual hallucinations, and they're terrified to tell the doctor for fear they're going to get shipped off to a psychiatrist. Just stop and think for a minute. I'm worried about why I'm seeing snakes swimming in milk and my doctor answers that question. And if it happens again, don't worry about it. It happens. I'm relieved. I'm not worried. I'm not scared. I'm not going crazy, and I'm not scared. There's something horrible happening with my brain. Hallucinations do not equal you’re crazy. Okay? A psychiatrist just told you that. There's another thing I wanted to talk about, and that is doctors saying, "Call us if anything changes." That's where I really got into trouble and basically lost functional vision in my left eye. The first practice had given me a very nice handout, which described dry macular degeneration and the symptoms of it.
The most common way to know if it's become wet is if you're seeing wavy lines. Well, I did a lot of research online and understood what dry macular degeneration is and what the symptoms are, and so on. In the meantime, I ask a fellow. The fellows will sometimes stop and chat with you, and they can be good at answering questions. But I asked a fellow, "How do I know when to panic? So far, I'm getting vague information. I don't know when I should really panic and make a phone call." He said, "Oh, you'll know. There'll be a big black hole in your central vision." Well, for a start, that's not true, and that's another problem. But anyway, some months later, I noticed while I'm reading the paper on an iPad, my vision's really not as good as it was yesterday. And over time, it got worse.
I kept checking the research I had on what dry macular degeneration looks like. It's all consistent. I've been seeing wavy lines for two years, so that's not relevant. I don't have a big black hole. So, I waited almost two months for a routine appointment, and then got hell because I should have come in when this changed. Well, if I go outside on a sunny day, I can't see my iPhone. That's a change. So, what do you mean by if something changes? So, here's my suggestion on this. Figure it out for yourself. What is your baseline? For me, if I'm reading the morning paper, I can read the text without any trouble, I can increase or decrease the font if I need to, I can do all the things to the screen that you already know from Hadley, changing background colors and all that sort of stuff.
Now, I know my baseline. And every day for months and months and months, I read the paper. Same time of day. Same lighting. I've just had breakfast. I've just had a good night's sleep. But when that changes, that's a change. So, I'd encourage everybody listening to this to figure out what is normal for you in a stable setting, and then pay attention to it. And if it changes, call. Missing that cost me my functional vision in my left eye.
Ricky Enger: Absolutely. And I appreciate your description of not just finding a baseline, but how to do that. So, starting from a point where your routine is consistent, you have a consistent thing that you pay attention to each day, and then you can figure out what's deviating from that.
Judy Box: Right. If something has changed and you call in, say my example, I have been able to read the paper every morning on my iPad, and today I can't,-
Ricky Enger: Right.
Judy Box: ...that's the difference. Saying, "I can't read the iPad," doesn't tell them anything. What's normal for you?
Ricky Enger: Yes. That makes total sense. And anything else you want to add before we wrap things up?
Judy Box: Ask your doctor, "What do I do if I have an emergency? Where do I call? What about the weekends?" Because if you don't know the answer to that question, you might have a problem on Friday and put it off till Monday.
Ricky Enger: And that might be too late. Yeah.
Judy Box: Here's another example. I was sitting in the bathtub 20 years ago and realized with one eye closed, I couldn't see the faucet at the end of the bathtub. I waited till the next morning to call the ophthalmologist. And when I went to see her, she gave me all sorts of grief. It was a stroke, and it didn't matter that I'd waited till the next day. And she said, that might've been a retinal detachment, and that would've been a big deal if you'd waited till the next morning.
Ricky Enger: Right. So just being vigilant about those things and have an idea of what to do in an emergency.
Judy Box: If something changes, I can't see the faucet with my left eye closed, that's a change. And by the way, when you're testing your eyes, check one eye at a time, because with two eyes, you'll always see better than with one eye.
Ricky Enger: Right. That makes total sense. All of this has been incredibly helpful, Judy. I know that people who are listening are experiencing some or all of this in their own doctor's appointments, and I think that just having some of these strategies to what to do when something happens, it helps to have something in your back pocket to say, well, if this happens, I know what I can do next. It just makes things easier for people. This has been very, very helpful. Thank you so much.
Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's [email protected] or leave us a message at 847-784-2870. Thanks for listening.
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Episode 73
Unfortunately, it's not uncommon for feelings of shame to creep in when we've lost some vision. Join social worker Jeff Flodin and psychologist Ed McDaniel, both visually impaired themselves, as they explore where these feelings come from and how they have worked through these emotions in their own lives.
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Episode 72
Listen in as Dorrie Rush of OE Magazine shares how she resisted using a white cane for years, the stigma she feared, and the confidence and security she found once it was in her hand.
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Episode 71
Learn how CVS pharmacy customers throughout the US can access a free service that reads aloud prescription medication information.
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Episode 70
Join us as we chat with author Hannah Fairbairn about the tips and tricks she has learned to take some of the stress out of holiday get-togethers, no matter your vision.
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Episode 69
We're joined by the creator of The Blind Life YouTube channel, Sam Seavey. Sam shares his personal journey with vision loss and advice he has for people who are newer to vision loss.
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Episode 68
Whether you like to read for enjoyment or need to check your mail, reading is an essential part of your day. We're sharing tips and tricks for how to continue reading, the best low-tech and high-tech gadgets, and the benefits of learning braille.
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Episode 67
Chief Innovation Officer Doug Walker chats with us about the launch of Hadley's newest podcast, Insights & Sound Bites. This new podcast will offer short stories shared by listeners. By tapping into the power of our community, we hope to share ideas, discoveries, and moments of inspiration along the journey through vision loss.
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Episode 66
Jim Hoxie and Joanna Jones join us to discuss their children’s book, "Grandpa's White Cane." Jim shares how vision loss shaped his life and how he and Joanna, a retired teacher, began instructing children about the importance of white cane awareness and the do's and don'ts for helping people with visual impairment.
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Episode 65
Blogger and social worker Jeff Flodin talks about his personal journey with vision loss and how his passion for helping people led him to blog about his experiences.
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Episode 64
Hadley has partnered with the National Eye Institute (NEI) to offer a Spanish-language version of our popular cooking workshop series. Devina Fan, director of the National Eye Health Education Program at NEI, joins the podcast to talk more about this new initiative, NEI’s expanding Spanish content, and the importance of connecting Hispanic and Latino communities to important vision resources.
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Episode 63
A change in your vision may make some parts of your job more challenging. But with a bit of help and some new skills, you may be able to stay in your job. Hadley Chief Program Officer Ed Haines and Learning Expert Steve Kelley join the podcast to talk about our new Working with Vision Loss workshops and to share tips for where to find support and how to ask for what you need.
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Episode 62
Certified accessible travel advocate Melvin Reynolds joins the podcast to share tips for getting the most out of traveling, no matter your level of vision. Melvin gives advice on what to research ahead of a trip, considerations for traveling with a guide dog, and how a certified accessible travel advocate can help.
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Episode 61
Karen and Dan Leonetti share how vision loss has changed their relationship and the advice they have for other couples.
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Episode 60
Rabbi Lenny Sarko joins us to talk about how his vision loss journey led him to create a first-of-its-kind braille Sefer Torah that people around the country can access.
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Episode 59
Actor and artist Bruce Horak talks about his personal journey with vision loss, how he got interested in painting, and his role in the new television series Star Trek: Strange New Worlds.
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Episode 58
CEO of Eschenbach Optik of America Ken Bradley joins the podcast to discuss how Eschenbach has adapted through the pandemic to help people with visual impairment access low vision devices remotely. Through their "Telelowvision" program, you can try out magnification devices from the comfort of your home to find what works best for you before you buy.
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Episode 57
Scottish radio broadcaster and podcaster Steven Scott loves finding and talking about tech stuff. He's especially fond of apps and gadgets that make life easier for him and others with vision loss.
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Episode 56
NYT Columnist Frank Bruni returns to the podcast to talk about his new book. Frank describes his personal experiences with vision loss and how, with time, his perspective has grown.
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Episode 55
IT professional and stand-up comedian Todd Blenkhorn talks about his personal journey with vision loss and how his passion for stand-up helped him find and share the humor in daily interactions.
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Episode 54
In this episode, we're sharing highlights from previous interviews with a glaucoma specialist, retina specialist, and a low vision doctor. Listen in to learn more about common eye conditions, treatments, and what to expect at these specialist appointments.
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Episode 53
Master Gardener Sue Brasel and Hadley's Chief Program Officer and gardener Ed Haines join us for a chat about gardening, no matter your level of vision or gardening experience. They share tips for how to get started, common challenges, and the many benefits of gardening.
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Episode 52
We're joined by Carol Mackey, an avid discussion group participant, and co-host Debbie Worman to chat about what Hadley groups are, how to join, and what you can get out of them. With 10 groups on a variety of topics, there's something for everyone. Listen in or chime in – it’s up to you.
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Episode 51
Bold Blind Beauty blogger Stephanae McCoy joins us for a chat on beauty, style and confidence. Stephanae talks about how vision loss shaped her life, and then shares some of her favorite fashion and beauty tips.
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Episode 50
Hadley staff share their favorite kitchen gadgets and tips. Whether you're an experienced home chef or a total novice, you're bound to pick up a few ideas that fit your vision needs and make your time in the kitchen more productive (and fun).
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Episode 49
We sat down with Kim Walker, co-director of research and development at Hadley, and Mark Andrews, one of the Hadley advisors who reviewed our exciting new approach for adults with vision loss to learn braille. From labeling items in your home to identifying buttons on an elevator, braille can be a wonderful tool for everyday use.
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Episode 48
New York Times Best-Selling Author, Gretchen Rubin, chats about her research on how tapping into different senses can enrich our lives and connect us to each other in surprising ways.
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Episode 47
Twin sisters Jenelle and Joy join the podcast to share their personal experiences with vision loss and adjusting to it emotionally. While they look identical, their perspectives and journeys differ, highlighting their mission to show that "there is no right way to go blind."
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Episode 46
Hadley learner Sharon Noseworthy shares tips and tricks for hosting get-togethers of any type or size, no matter your vision. Sharon has always loved the role of hostess and has learned to adjust her approach now that her own vision has declined.
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Episode 45
We're joined by Teepa Snow, occupational therapist and founder of Positive Approach to Care, to learn more about the challenges of having both vision loss and dementia. Teepa addresses common misconceptions about dementia and shares practical tips for supporting someone with both conditions.
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Episode 44
We sat down with several Hadley staff members and asked them about their favorite tech tips, apps, and gadgets. Whether you consider yourself a tech expert or novice, the group recommends a variety of high-tech and low-tech options that fit your comfort level and interests.
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Episode 43
Judge David Tatel has served on the second most powerful court in the country since 1994. He also happens to be blind. Judge Tatel joins us to share his story on building a law career and family while dealing with changing vision, the technology and resources he's found useful, and what made him consider getting a guide dog in recent years.
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Episode 42
In honor of White Cane Safety Day today, we're joined by Hadley learner Larry Carlson and Orientation and Mobility Specialist Elijah Haines for a conversation about this important tool. Larry shares what made him decide to use a white cane, and Elijah shares tips for what to consider and how to adjust to using a white cane.
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Episode 41
Supriya Raman, manager of the Disability and Multicultural branches of the TSA, shares tips on traveling among shifting COVID restrictions. Supriya covers what to expect at the airport and what resources are available for people with visual impairment.
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Episode 40
Photographer Michael Nye chats with us about his latest art exhibit, "My Heart is Not Blind," a collection of photos and audio interviews of people with visual impairment. Through these stories, Michael provides a look into what he calls "our shared humanity and shared fragility," as well as common misunderstandings about blindness.
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Episode 39
Champion blind golfer Chad NeSmith talks about how vision loss shaped his life, and how he shares his passion for golf with others with vision loss.
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Episode 38
Doug Walker, Hadley co-director of R&D, and Ed Haines, Hadley Chief Program Officer, chat about the making of Hadley's "Adjusting to Vision Loss" workshop series. The series guides people through the emotional aspects of vision loss. Doug serves as the series' personal storyteller and narrator.
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Episode 37
In this episode we chat with ophthalmologist Dr. Angela Elam from the University of Michigan. Dr. Elam addresses common questions and concerns, and shares her advice for returning to the eye doctor among shifting COVID restrictions.
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Episode 36
Dorrie Rush, OE's Chief Content Officer, joins us for a chat about this wonderful online resource chock full of tips for living well with vision loss. You'll find great articles on using tech tools, tips for health and well-being, stories from others living with vision loss, a terrific podcast, and more.
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Episode 35
Learn about a new service that’s just launched in 2020 called Accessible Pharmacy. Accessible packaging and labeling and personalized customer support all free of charge to the end consumer, and specifically designed for those with vision impairment.
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Episode 34
Audio Describe the World! That’s the mantra of UniDescription: a free smartphone app that provides audio descriptions and navigation tips for US National Parks and other public places.
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Episode 33
In this episode, we chat with low vision optometrist Dr. Mark Wilkinson from the University of Iowa. Dr. Wilkinson answers common questions and shares his advice for getting the most out of low vision optometry appointments.
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Episode 32
Jan and Elgie Dow share how vision loss has changed their relationship and the advice they have for other couples.
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Episode 31
Join Hadley advisor Eddie Becerra as he shares about losing his sight from diabetic retinopathy, and how he gained a new perspective on life.
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Episode 30
Classically trained chef Regina Mitchell shares how vision loss shaped her life. Regina worked her way back into the kitchen and is now helping others cook with confidence, no matter their vision.
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Episode 29
In this episode we sit down with the director of Well Connected, an organization that offers free, call-in groups for adults over 60 on a wide variety of interest areas: games, music, meditation and more.
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Episode 28
Support groups can be a great way to connect with others who "get it." Listen in as as low vision support group leaders Lynndah Lahey and Judy Davis describe how their groups are run and what their members get out of them.
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Episode 27
World-renowned artist John Bramblitt describes how vision loss has shaped his painting and his life.
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Episode 26
In this episode, we chat with Dr. Tim Murray of the American Society of Retina Specialists. Dr. Murray treats eye diseases such as macular degeneration and diabetic retinopathy. He answers common questions and shares his insights into the future of treatments.
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Episode 25
In this episode, we sit down with Dr. Jullia Rosdahl, a glaucoma specialist from the Duke Eye Center, and ask her some of the many questions we’ve heard about glaucoma, its risk factors, and how to treat the disease.
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Episode 24
Hadley learning expert Jessica Smith shares her experience raising a puppy that may eventually become a guide dog. She covers what she’s learned and things to consider if you’d like to volunteer to help out a guide dog school.
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Episode 23
October 15 is White Cane Safety Day, a day to recognize this important tool that empowers people with visual impairment to travel safely and independently. It also brings attention to the general public to be mindful of visually impaired neighbors, giving them additional consideration and right-of-way when needed. We sat down with Kellee Sanchez, an orientation and mobility specialist, to talk about the history of White Cane Safety Day, and how a white cane can help those with vision loss.
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Episode 22
Be My Eyes is a free smartphone app that connects visually impaired users with sighted volunteers for help with visual tasks. We sat down with Will Butler from Be My Eyes to hear how the app started, tips for using it, and exciting new features that provide specialized assistance, including with Hadley.
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Episode 21
Tracy Simon from Eye2Eye peer support program shares her story of vision loss, how her program works, and the benefits of connecting with and supporting each other.
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Episode 20
Ophthalmologist Dr. Lori Provencher chats with us about how the coronavirus pandemic has changed doctor's visits. She shares tips for staying safe, questions to ask, and what to expect before, during and after your next office visit.
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Episode 19
Mindfulness expert Tiffany Guske returns to the podcast to share tips and insights on how to cope with life's challenges, such as vision loss or an illness, building resilience and focusing on self-compassion instead of judgment.
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Episode 18
Author of "When You Can't Believe Your Eyes," Hannah Fairbairn, chats with us about how to communicate in everyday situations when you can't rely on visual cues. Hear Hannah's own story about losing vision, her practical tips on adjusting to vision loss, and advice she has on regaining confidence in social situations.
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Episode 17
In this episode, we continue the conversation on living during the COVID-19 pandemic with a visual impairment. Listen in as we share some experiences, tips, and strategies for coping during these difficult times.
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Episode 16
The COVID-19 crisis has brought a wave of change and uncertainty to our everyday lives. Listen in as we share personal experiences, resources and some helpful tips...all from a blind or low vision perspective.
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Episode 15
Assistive technology experts Ricky Enger and Steve Kelley review BlindShell, a mobile phone built for those with visual impairment. They discuss the basic features, how it differs from a traditional smartphone, and how to decide if it's right for you.
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Episode 14
This week we sit down with Dan Roberts, author of "The First Year-Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed" and founder of MDSupport website and support group. Hear Dan's own story about being diagnosed with macular degeneration and what prompted him to reach out to others facing similar circumstances.
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Episode 13
Listen in as we explore the basics of using hand tools with a visual impairment. Gil Johnson, a visually impaired home repair expert, shares tips on everything from measuring, to leveling to hammering.
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Episode 12
Elections are right around the corner. So we gathered a panel to talk about options for voting no matter your level of vision. Listen in as we explore everything you need to know, from registering to vote to the many ways you can cast your ballot.
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Episode 11
Ricky sits down with Android Accessibility Product Manager Brian Kemler to discuss what is available on Android phones for those with visual impairment. From adjusting font size and color, or opting to listen with TalkBack instead, the commitment to making these powerful tools more useful to a wider audience is clear.
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Episode 10
In this episode, we chat with Gil Johnson, an experienced home repair and woodworking enthusiast about things to consider when undertaking home repair with blindness or low vision.
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Episode 9
Hadley's Debbie Good sits down to continue a conversation with author and visually impaired world traveler Dr. Wendy David. Together they explore a wide variety of helpful hints covering train, plane, and cruise travel as well as practical information on traveling internationally and navigating hotels.
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Episode 8
In this episode, Ricky Enger chats with Joe Strechay, associate producer on the Apple TV+ series SEE. The show takes place in a future where, after a viral apocalypse, all humans are blind. Joe takes us behind the scenes of the show and his work to help build an inclusive set for the cast and crew, including those with low to no vision. From casting to costumes, scripting to scenery, hear how Joe helped create a science fiction world that strives to be authentic to life with vision loss.
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Episode 7
Hadley's Debbie Good sits down with travel author Dr. Wendy David in this latest episode. In part one of this two-part interview, Debbie and Wendy discuss tips for traveling with confidence as a blind or low vision person, advice on picking destinations, considerations for traveling alone and in a group, and more!
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Episode 6
Ricky Enger is joined by Hadley's Debbie Worman and mindfulness expert Tiffany Guske in this latest episode. Debbie and Tiffany talk about what mindfulness is and the specific benefits that mindfulness can offer for those living with vision loss. Tiffany then walks listeners through a short mindfulness exercise.
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Episode 5
In this episode, Ricky Enger speaks with New York Times columnist Frank Bruni, who shares the story of his sudden vision loss from NAION. Bruni speaks candidly on his adjustment to the change, maintaining a realistic attitude towards his vision loss, and the failure of medical professionals to provide resources after diagnosis.
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Episode 4
Listen in as we share practical tips on how to keep your handwriting readable. This resource-packed episode includes many useful techniques and solutions to common handwriting challenges. Hadley Learning Expert Jennifer Ottowitz chats with Sue Dalton, Certified Vision Rehabilitation Therapist.
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Episode 3
In this episode, Hadley's Steve Kelley speaks with Kendra Farrow, from the National Research and Training Center on Blindness and Low Vision, located at Mississippi State. The episode serves as a guide for those new to vision rehabilitation, including determining who is eligible for services, key differences between the medical and social services models, and how to locate services in each state.
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Episode 2
In this episode, Ricky Enger chats with Microsoft's Jeremy Curry, a Senior Program Manager with the Windows Accessibility team. New vision accessibility features are now available in Windows 10 for low vision and screen reader users.
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Episode 1
In the inaugural episode of Hadley Presents, Ricky Enger and Jonathan Mosen of Aira chat about the ways in which a visual interpreter service, such as Aira, can be used to gain valuable visual information and enhance travel and leisure activities for blind and low vision users.