When a Parent Loses Vision: A Conversation with Adult Children
Join siblings Jack, Cathie, and Paula as they discuss the impact of their mother's vision loss on the family. Hear how they've come together as a team, learned how to find services, and continue to help their mom maintain her confidence and sense of well being.
Hadley Presents
When a Parent Loses Vision: A Conversation With Adult Children
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 the impact of vision loss on a family when a parent has been diagnosed. And joining us, are siblings, Jack, Cathie, and Paula, along with Hadley's Chief Program Officer, Ed Haines. Welcome to the show everyone.
Jack: Thanks, Ricky.
Cathie: Thank you.
Ricky Enger: Wow, so glad to have everyone here. It is a full house, which is fantastic. We've been looking forward to discussing this topic for quite some time, and we figured the more the merrier. Before we get into Ed's fantastic questions, and just getting to learn a bit more about the family dynamics, and how vision loss impacts those things, why don't we get a quick intro from each of you? Let's start with you, Jack.
Jack: This is Jack Merriman and I am one of five siblings. I'm on the call with you today with my older sister, Paula, and younger sister, Cathie.
Ricky Enger: Excellent, thank you. And Paula, how about a bit from you?
Paula: My name is Paula Loret de Mola, and I am the oldest of the five siblings. And I live approximately 45 minutes from my parents.
Ricky Enger: Great, thank you. And finally, last but not least, Cathie.
Cathie: I'm Cathie Rigazio. I live in Minnesota, so I don't get the experience with my parents, like my siblings do. But I was just visiting them for two weeks, so I did see quite a bit those last two weeks.
Ricky Enger: I imagine so, and I'm sure there's a lot with phone calls back and forth, as well. Thank you so much for joining us and we're glad to have all of you here. Before we jump in again to Ed's list of questions, I just had one. I know that vision loss comes in all shapes and sizes and can happen to people of any age. There are parents of toddlers and school age kids who lose their vision, middle aged parents with kids in college, and parents who are seniors. Can we just get a description of what the particulars are with your mom? When she was diagnosed and what the diagnosis is, and just a bit of that background. Paula, we'll let you take that one.
Paula: My mom was first diagnosed in 1979. She was 48 years old. She had been doing a needle work project that was becoming more and more difficult. She went to the eye doctor and her eye pressure was extremely high, I believe it was 50. She had surgery on that eye, and subsequently was diagnosed with glaucoma. She progressively lost vision in that eye along with eye color. She still had vision in one eye. But then after that, we found out that the initial glaucoma diagnosis was incorrect, that it was more high pressure. Regardless, she still was blind in one eye. She did fairly well, until not too long ago, when she was diagnosed with macular degeneration. She was diagnosed first with the dry eye, which she was delighted with, because that was "the good" macular degeneration, and hers did progressively get worse.
When she was undergoing the macular, I realized we needed some help, and there was not much help out there. You went to the ophthalmologist visit, they gave you the medical piece, but there was no, "Well, what can we do? What kind of support can we put in place? We need a bag of tricks." So, I became connected to the Spectrios Low Vision Center, and they actually were very good. We went for the first time in 2014. At that time, we became aware of specific assists, which have been very helpful. I think that the macular piece now is going a little bit faster than any of us anticipated, but intellectually knew was possible. And so, that's why we're reaching out to try to find better ways to give her a better quality of life.
Ricky Enger: Certainly. And wow, it really runs the gamut of progressive vision loss, and not just one kind of vision loss, but two kinds. She initially lost vision in one eye and then progressive vision in the other, so just really a lot of different experiences as time has passed. And I think what you've talked about with the ophthalmologist giving the medical diagnosis, and then off you go, it's up to you to figure out what happens next is, sadly, a common thing. And I think that as we continue here, those things will get covered in a bit more detail. With that, I know, Ed, you have several questions, so I'll just turn it over to you and we'll proceed then.
Ed Haines: Thanks so much, and I should say I'm so excited to have this conversation. Since we heard from Paula, I'll just let Cathie lead with this next question. Cathie, did you find there were differences in how you, as siblings, reacted to your mother's vision loss in her good eye, her most recent vision loss?
Cathie: I mean, we are more cautious with her. When we take her out, someone's always with her at all times to make sure she can get to where she needs to sit down in a restaurant. Or, even just when I'm home for a short visit, helping her with her coffee, downstairs, or just doing little jobs without taking away her self-respect, because she still likes to do a lot herself. We're all just really cautious of her feelings but are her eyes for her too.
Ed Haines: And how about you, Jack? Did you find there were any differences in how you reacted to your mother's vision loss, say, from Paula or Cathie?
Jack: No, I think it's pretty similar, Ed. I think probably the big difference is you don't really understand it until you live it. Unless you're there every day, or if you're there on a regular basis, it's hard to really comprehend or understand exactly what's going on. To Paula's credit, she's been really good about keeping everyone informed and up to date, so there are "no surprises." We also have a younger brother who happens to live in the same town as our parents, who lives, maybe, a mile away. Between Paula and Dan, they see our parents regularly, almost every day. So, I think when you see them every day, it has a different impact on you than when you see them once a week or once a month.
Cathie: And I think with mom, she wants to still do a lot of stuff, and that's hard for her to understand that she can't do it. We still let her do what she wants to do without treating her like you can't do that. We really worked hard not to do that to her, that you can do it.
Ed Haines: I'll throw this out to any one of you. When your mother was first diagnosed with macular degeneration in her good seeing eye, what were some of your initial concerns?
Paula: I'll jump in on that one. Initially, I was concerned that she was eventually going to be totally blind, and that made me even more anxious to figure out how we could do this. When she was given the diagnosis of macular degeneration, the wet diagnosis, which was the progressive one, the ophthalmologist stated that, "We're not going to let you go blind." Well, that's a lovely thought, but intellectually and medically I know that's not a guarantee. My mom continues to hang on to that and you can't take it away. I don't know that she's not ever going to be completely blind, but she's already seeing the differences, the changes. You might not wake up completely blind, but what you can see is severely limited.
Cathie: I think in the beginning I was like, "Okay, she'll be all right. It's mom, she'll be fine." But now what worries me is they're aging. My dad's much older than her and they're still in their house, and I'm afraid we can't ever take her out of that house because she knows the surrounding area so well. And that is a fear that I have. If she does eventually go blind, and dad's not around to help her, what are we going to do next?
Paula: Aside from the physical limitations of partial blindness, blindness, there's also that emotional piece that I have struggled with how to get help, to help her with that, to help us with that. It's an acceptance. It feels like the stages of grief in some ways. I still struggle with how best to help her with that, because it's not going to get better. I feel like we just need more in our bag of tricks, and we're stuck sometimes on that emotional piece.
Jack: When the macular degeneration became known, I think everybody started thinking about, "Okay, what do we do?" As Paula described, it wasn't a single solution to it. Everybody started thinking about it. And candidly, that's when we reached out to Hadley. My wife had been actively involved with Hadley for 20 plus years and we reached out to somebody at Hadley. We got ahold of you. Hadley has reinforced one, a lot of the concepts and practices we've already put in place, but two, and probably more importantly, in answering your question, gave us more ideas and suggestions on how to handle this. The periodic emails that we get from Hadley about, "Have you thought about this," have been really helpful. And we've started sharing those with our mom and I think she benefits from them.
Cathie: Knowing to put those little dots on her remote control, or her light switch is so good for her too, because then she feels in control. And it gives us a little peace that, "Okay, mom can do this. She's doing okay." We are so appreciative of all that you have done for us.
Paula: I know that the whole thing is a process, accepting help, accepting the reality, accepting the possible future, and some of it is easier to overcome than others. So that said, because she's older, there’s more resistance, sometimes resistance, to the help, and that's been frustrating for me personally, because if the help is out there, let's just run with it. The help is there, the assists are there, and now let's just figure out how best to use them.
Ed Haines: You're right, Paula, it is a process, and people obviously just have to be ready for assistance on their own to be able to make the most of it. It's those little victories, like labeling the remote control. Things like that give people the impetus to move on to something else. I'm thrilled that she's taking advantage of resources that are out there. Paula, maybe I'll ask you, when she was given her initial diagnosis of macular degeneration, was she given any information about what to do next from her ophthalmologist? And then, how long from her initial diagnosis did it take for you folks to learn about low vision services?
Paula: She was given no information on what to do. We had already been to Spectrios for help after the glaucoma diagnosis, so that was before the wet macular diagnosis. No, no help, at all. I remember sitting in the ophthalmologist’s office thinking, "Oh my gosh, now what do we do?" And I'm an educator. I taught kindergarten for years and I'm used to having a game plan, and there was none. There was none offered. I resorted to furtively glancing at the brochures that were behind the door looking for anything, and that's how I found Spectrios, and then I reached out to them. And then, luckily, we were blessed with the Hadley piece, as well. But no, nothing was offered. We were on our own.
Ed Haines: Well, that's not an uncommon experience, unfortunately, but I appreciate you articulating that. A couple of you have talked about offering your mom assistance. What is your approach when you offer assistance to your mom? How do you handle that to help her be receptive to assistance?
Cathie: Well, one of the videos that you had sent out, which mom and I watched last week, was how to walk with her. It was always me holding onto her, but I think she's supposed to take my elbow, right?
Ed Haines: Yeah, your arm above your elbow, right.
Cathie: I need to practice that, as you can hear, but that was a really good thing to have that information on how to lead her.
Ed Haines: And Jack, how about you? How do you approach when you want to try to help your mom, how do you approach that to help her accept your assistance?
Jack: It's probably more basic than what Cathie described, but I'll just ask what can I help her with? If we're walking, having watched that video, I'm trying to have her grab my arm. But candidly, most of the interaction that I have with them is at home, around the kitchen or the dining room table, so there's not a lot of going out. If we need something from the house when I'm there, oftentimes I'll just go get it, so that my mom or dad don't have to get up and walk up and downstairs to go find something.
Ed Haines: Do the three of you, or your other siblings as well, talk together as a group about the future, about the possibility of her losing more vision and what you think you'll do as a family?
Paula: We have begun Zoom calling on a regular basis. And that's wonderful, because that's an easy way for me to update everybody on the latest eye appointment. Things that are going on. Cathie and I have done the research on assisted living, which neither of my parents are interested in, so I don't think that's going to be a huge option. We need to talk more about what are our home care possibilities, if and when, that becomes a necessity. So those monthly phone calls have been invaluable.
Cathie: They are really helpful, our monthly calls, because sometimes we weren't all on the same page. It really helps the other ones who may not be on the same page to hear what we're seeing. So, I think the Zoom calls have really helped us a lot.
Jack: In our circumstance, we have three people, three kids, that live within an hour, hour and a half, of our parents. We have one, Cathie, lives out of state. Our brother, Mike, lives out of state. Obviously, it's a little tougher for them to be there day-to-day, or even a week-to-week. But by doing the Zoom call, everybody, with some regularity, is totally up to date about what's going on and what the priorities are, and candidly, what everybody is doing. Before we started the Zoom calls, Paula would go to my parents' house. She's probably there once a week or so, maybe twice a week. We didn't know what she had done. She didn't know what I had done. We didn't know what our younger brother, Dan, had done, so this just gave us a chance, every three to four weeks, to bring everybody up to date about what efforts have taken place and what people are working on.
Ed Haines: Well, that sounds like a terrific practice. Definitely something that you could recommend to other folks, I'm sure. I was just wondering, what are some of the strengths that your family brings to this situation?
Paula: One of the strengths is we were a tight family growing up. We were all connected. We all have strengths that we bring to the table, and, as adults, those have become a little bit more obvious, the skills that we do bring. I think that's been a help. I think we just honestly love them and want them to experience all the best they can, all the days that they have here.
Ed Haines: Well, thank you. That's a wonderful sentiment, certainly. What advice would you give to other families who have parents with vision loss?
Paula: I would advise seeking out the help, try to do the research, find the people that can help. Like Mr. Rogers says, "Look for the helpers." It's time-consuming and a lot of times you feel adrift, but it's a necessary thing to do to help them. The other piece is it's not just the physical piece about how do we help her sit in a chair and find the best way to watch television or whatever, but that emotional piece. And that's something that I continue to struggle with, because I feel like I'm failing her there. I don't know how to help. I don't know the best things to say all the time. Sometimes I just introduce an idea, knowing it's not going to be accepted right away, and I continue to do that knowing that, eventually, she'll get there and that will help everyone. So, I think just seek out the help, because it's not easy to find.
Jack: What I'd throw in there, Ed, is one, I've realized that this is not going to be solved and you're not going to have nirvana and success in 30 days or 60 days. This is going to be a lifelong responsibility and exercise that we need to deal with. Two is, you got to start small, look for small wins. That way, when mom sees it helps her, she's more willing to try the next one. And as Paula said, sometimes you try it and it gets rejected, but you can't forget about it. You just have to be patient and try to reintroduce the idea, or the concept, again down the road. But it's that long progressive path that you have to take in order to have success. What I've noticed is when some of these ideas have been implemented, what it helps is with her sense of confidence, her sense of individualism, and that even though she has lost sight, and her sight is limited, that she can still function and survive and be productive every day.
Paula: The conversation, Ed, that we had with you a few weeks ago, where she actually was able to talk to someone who knew more about it than any of us, and validated her concerns, her fears, what was actually going on, was so wonderful. And so, I thank you for that support. When we go to the ophthalmologist, as I said, you had said it's a seven-minute visit, and that is right on target. That they do what they need to do, they come, and they say what they need to say, and then you're on your own. I don't look for anything different there anymore, but knowing that's normal, doesn't make it right, but now I'm not so annoyed by it. So just being validated and having someone hear her was very wonderful, so thank you for that.
Ed Haines: Well, you're very welcome. It was really a pleasure to meet with her and it's great to hear.
Ricky Enger: Yeah, for sure. I think that's probably a challenge that a lot of people face, especially parents who are used to being the ones in control, and the ones who are giving their children advice, and the ones with all the answers. It must feel especially vulnerable to then be in that position of how do I talk to my children about how I'm feeling? How do I express some of these emotions? And then, how do we, as a family, figure a way forward? As you said, Jack, just that individualism is maintained, and at the same time, help can be given and accepted, either immediately or perhaps over time. Any final thoughts that any of you want to leave our listeners with? We've covered quite a bit, but there may certainly be something that we haven't touched on that you'd love for other families to hear.
Cathie: Well, just like it takes a village to raise a child, it takes a village to help your parents as they get older. I mean, I'm just so thankful to have my siblings to be able to talk to about this, and to have Hadley to be able to reach out to, now, to get help. You all just have to work together. And you're going to have hard days. I mean, it gets hard. It's sad. It's just good to have people to talk to.
Paula: In a family situation, you recognize each other for the strengths that they have, use those strengths in different circumstances. Not everybody has close proximity, but a phone call, a FaceTime call that we can arrange, things like that. So, use those strengths that people have to help out when you can.
Jack: In our circumstance, Paula has been the primary source for taking our parents to the doctors, in this case, for the eye doctor. And I think on one hand, especially when there's multiple siblings, or multiple people in the family that want to help, you really need to have one person lead the effort. But everybody else has to be willing to hear what's going on and participate in the follow-up. As Cathie said, she can't be there every day, but as we need to do research on a particular topic, she's more than happy to do that. But I think it's important to have one person be the point person responsible for the effort, and then everybody else needs to add their expertise where they can, when they can.
Cathie: And I think being the out-of-town person, you have to be careful not to expect the people who are in town to do it all. I mean, I can't always say, "Well, Jack, you need to do this. Paula, I think you should do this." I mean, you really can't do that to them either, because it's a lot, so you have to be really careful not to give your opinion if you can't help with it.
Ricky Enger: I love hearing that, just figuring out those logistics and making sure that everyone is doing what they can, and that everyone feels appreciated and supported. I think you really hit the nail on the head when you talked about your family's strengths. It is about communication and recognizing what each person is best at, and still being willing to jump in, and help where you can. Thank you for that. And thank you also for sharing your experiences and your stories with us. So happy that Hadley has been of help to all of you and to your parents, and hope that continues. As Ed said, "It's what we're here for."
Paula: Well, we looked for the helpers and we found it. We thank you.
Cathie: Yes, you're our new best friends.
Jack: I think we have you on speed dial.
Ricky Enger: That's what we love to hear. Thank you all so much.
Cathie: Thank you.
Paula: Thank you.
Ricky Enger: 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 podcast@hadley.edu. That's P-O-D-C-A-S-T@hadley.edu, or leave us a message at (847) 784-2870. Thanks for listening.
All Episodes
-
Episode 106
Prevent Blindness' patient advocacy program empowers people facing vision impairment. Patients learn how to promote change with their physicians, their families, drug companies, and even policy makers.
-
Episode 105
Ever thought about getting a guide dog? Listen in as we chat with members Jeff Flodin and Ed McDaniel about their experiences with guide dogs and some common misperceptions.
-
Episode 104
The National Library Service has a free talking book program for anyone in the US with vision loss. Tonia Bickford, an advisor from Michigan's talking books program, joins us to discuss how to get the most out of this free service.
-
Episode 103
This week we learn more about visual hallucinations that sometimes accompany vision loss, a condition called Charles Bonnet syndrome.
-
Episode 102
Sometimes vision loss can make us feel less secure. This week we talk about personal safety with Hadley's Chief Program Officer, Ed Haines.
-
Episode 101
For many living with vision loss, watching TV is less enjoyable as they can't see what's happening on the screen very well anymore.
Audio description fills the void by narrating key visual elements. Listen in as Ricky chats with Hadley member and avid audio description user, Judy Davis. -
Episode 100
Listen in to our conversation with Dr. Mondal, a low vision optometrist and professor at the University of Wisconsin. We chat about what to expect from a visit to a low vision specialist and the kind of help they can offer.
-
Episode 99
Have you listened to Hadley's community-generated audio podcast yet? In this episode, Ricky and Marc Arneson, Hadley's Director of Community, share a few stories from Insights & Sound Bites and discuss how to contribute your own story. Insights & Sound Bites | Hadley
-
Episode 98
Listen in as artist Chloe Duplessis explains how a degenerative eye disease changed, and didn't change, her life and love of art. "I thought art required sight. I was wrong."
-
Episode 97
Dr. Judy Box, a Hadley member living with macular degeneration, shares her tips for managing those important conversations with your eye doctor.
-
Episode 96
In this episode, the Hadley team talks all things gifts. Giving them, getting them, what's on their wish lists, and how vision loss may, or may not, impact these activities.
-
Episode 95
Friendships often change when one has vision loss. Whether it's adaptations to the activities you enjoy together, asking for help, or turning that help down … there are conversations to be had. Let's tune in as two Hadley members, Eugenia DeReu and Tara Perry, share their experiences with what's changed for them — and what's stayed the same.
-
Episode 94
Losing some vision can make for shopping challenges. Here are a few mishaps that Hadley members have run into. Have your own to share? Email us at podcast@HadleyHelps.org
-
Episode 93
This week we chat with the chief technology officer from Envision as he shares how their free mobile app or camera-enabled glasses can help those with vision loss. It speaks aloud written information, describes surroundings and objects, and even tells you who's nearby.
-
Episode 92
Lots of questions, concerns, and stereotypes connected to use of the white cane. In this episode, we address several of them from past discussions on the topic.
-
Episode 91
Listen in as Hadley's Director of Community, Marc Arneson, chats with Hadley members Bill Massey and Gregory Peterson about their participation in Hadley's new Peer-to-Peer program.
To learn if getting a peer connection is for you, call us at 1-800-323-4238. -
Episode 90
Listen in as we chat with Ed Haines about getting the most out of our magnifiers.
-
Episode 89
Listen in as we chat with animal lovers Debbie Worman and Sheri Robinson about the joys and challenges of caring for a pet when you have vision loss.
-
Episode 88
Listen in as Hadley member, Wendy Spencer Davis, shares why she decided to learn some braille and how it's helping her in everyday life.
-
Episode 87
Ed McDaniel, a psychologist with low vision, joins us to talk about common emotional triggers people with vision loss face and how to recognize and manage them.
-
Episode 86
Jessica Grogan from the American Diabetes Association joins us to talk about managing your blood sugar with vision loss.
-
Episode 85
Tune into our chat with Sarah Clark, a visually impaired marriage and family therapist, as she offers her unique insight into some common family dynamics that often make adjustment more challenging and how to navigate through them successfully.
-
Episode 84
Join us as we chat with Hadley member, Kris, about her experience living with vision loss in a senior community.
-
Episode 83
Listen in as Hadley staff share their real-life bloopers—times when things didn’t quite go as planned.
-
Episode 82
Join us as we take a dive into the features of the BlindShell cell phone.
-
Episode 81
Listen in as Pastor Scott Himel shares his advice for participating in religious services no matter your level of vision.
-
Episode 80
Join us to learn about how ScripTalk technology translates medication labels into speech and where you can find a participating pharmacy.
-
Episode 79
Join occupational therapist from Duke Eye Center, Fay Tripp, in a conversation about bioptic glasses—what they are and who can benefit from them.
-
Episode 78
Listen in as we chat with birding expert Freya McGregor who shares her tips on how you can enjoy this hobby, no matter your level of vision.
-
Episode 77
Listen in as Hadley's Doug Walker and Ricky Enger chat about how they use GPS in their daily lives. From walking directions to finding items or assisting a driver by navigating a trip, GPS can be a very handy tool.
-
Episode 76
Listen in as we chat with Dave Steele about his life, poetry, and vision loss.
-
Episode 75
Listen in as we discuss some common situations that can make us feel unsafe and share ideas on how to address them. We're joined today by Christy Ray and Ricky Jones of STRIVE4You.Org
-
Episode 74
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.
-
Episode 73
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.
-
Episode 72
Learn how CVS pharmacy customers throughout the US can access a free service that reads aloud prescription medication information.
-
Episode 71
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.
-
Episode 68
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.
-
Episode 67
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.
-
Episode 69
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Episode 61
Karen and Dan Leonetti share how vision loss has changed their relationship and the advice they have for other couples.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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).
-
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.
-
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.
-
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."
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Episode 32
Jan and Elgie Dow share how vision loss has changed their relationship and the advice they have for other couples.
-
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.
-
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.
-
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.
-
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.
-
Episode 27
World-renowned artist John Bramblitt describes how vision loss has shaped his painting and his life.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
Episode 11
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.
-
Episode 12
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.
-
Episode 1
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.
-
Episode 2
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.
-
Episode 3
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.
-
Episode 4
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!
-
Episode 5
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.
-
Episode 6
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.
-
Episode 7
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.
-
Episode 8
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.
-
Episode 9
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.
-
Episode 10
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.