S1E7: The ‘Burden’ of Asking For HelpOvercoming perceptions: Learning that everyone needs help something and it's ok to ask. Featured guest, Sue Labar-Yohey, shares the story of her macular degeneration diagnosis and how writing and helped her create connections.
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In this episode…
Co-hosts Shawn Doyle and Dawn Prall begin the episode with a discussion on asking for help. Asking others for assistance can make you feel like a burden, but it’s an important skill to practice. Dawn brings forth the idea of people asking for help in all type of situations, such as customer service or dealing with a broken leg. We all need assistance at times and those who are helpers often get joy from giving aid. Shawn and Dawn then exchange views on gender roles and how they affect perceptions and vulnerability in needing help.
In the next segment, Shawn interviews psychologist and writer, Sue Labar-Yohey. Sue shares a personal story of her macular degeneration diagnosis and how writing helped her process her diagnosis and led to her connecting with others through her blogs. With the assistance of Linda Moore, they created a popular Facebook group for those with MacD to connect and find educational resources. Sue goes on to share her views on why it’s the best time in history to go blind. She then explains Apellis-2 and advancing research on treatment for AMD.
Shawn and Sue’s interview echoes the earlier conversation regarding asking for help. Sue’s top advice for those with MacD is to find acceptance and go ask for help. She reflects on acts of service as well as happiness created from supporting others. As an avid skier, cyclist, and dog-walker, Sue wants those with MacD to not be limited in their diagnosis, to find ways to be themselves, and to find gratitude in what they can do.
Next in the episode, Dawn and Shawn provide tips for living with MacD. They describe how to practice using peripheral vision and ‘ears to eyes’ strategies. These suggestions are useful for any stage of vision loss.
The episode concludes with information about the omniReader® from Vispero’s Bill Killroy and Mike Wood. The omniReader® is a lightweight, portable, scanning and reading device. The omniReader® has multilingual capability and you can customize the speed of the voice, the voice language, the size of the font, and the coloration of the font. The lightweight and durable product also has a handle for easy transportation.
What We Discuss in This Episode
The seventh episode covers the following featured topics:
“…a lot of people that I talked to say, ‘I would like to ask for help, but I don’t want to be a burden to someone else.’ If I ask someone for help, let’s ask you, Dawn, for help. If you help me, I’m not actually creating a burden for you. I’m actually creating joy for you because most people who are the helpers say, ‘It makes me feel good to help someone else.’ Even though you’re helping me, Dawn, you’re actually helping yourself, because you feel good about giving back to the world or to your community or to your neighborhood, or to your friend.” (2:58)
“…I think it’s hard for women to ask for help, because we’re supposed to be able to do everything. But it’s also difficult, and you tell me, I have lots of men in my life, happily, unhappily. But men don’t like to ask for help, either because I believe that society sees it as a weakness.” (7:40)
“I mean, when I met my optometrist, when she first told me I’d have to stop driving, and that, this is only going to get worse girl. I said, ‘Well, how am I going to get anywhere?’ She goes, ‘Ask.’ I said, ‘I don’t want to be a burden.’ And she says, ‘Oh, god, no, you’re not going to be a burden. One of the things that makes people happy is doing for others.’” (25:25)
“It’s Apellis-2…basically, they put a shot in your eye. Don’t worry, you are very, very, very numbed, at least I don’t feel it. It is slow, it is taking a piece, a domino, out of the complimentary system. The more and more that they look, macular degeneration is an autoimmune problem. It’s your body attacking yourself. That’s part of what they call the compliment immune system. The compliment immune system is ancient. It is in all sorts of animals going all the way down to like lizards and everything. It is a chain reaction, a long series of dominoes. What they’re doing is that knocking out a domino in the middle to slow down the chain reaction. Is that layman enough?” (32:18)
“This is the best time in history to be going blind. You have more opportunities; you have more help. You have more research than they’ve ever had before.” (42:38)
“Here’s a practical tip for living with macular degeneration: learn to use your eyes more efficiently, learn to use a more peripheral part of your retina to see more clearly.” (44:49)
“This product is basically a portable scanning and reading device. This will take any text that you have and convert it to audio output. If you’re looking to read a newspaper, read your mail, easily just put that underneath this unit. This unit has a built-in screen; it’s got a 10-inch screen on it. If you want to see the material that you’re reading, you can enlarge it. You can change the font coloration if you need high contrast, and you can also plug in your headset.” (49:30)
Did you do this, did you do that?
Transcription excerpts from this episode
Hello everyone and welcome to MyMacDLife. I’m your co-host, Shawn Doyle, professional speaker, trainer, and book author, and I’m here today with my co-host the lovely and talented, the amazing, the incredible, the irreplaceable, Dawn Prall, the founder and Executive Director of The SupportSight Foundation, and a visionary.
We’re happy you’ve joined us. We’re excited to bring you some great information, education, and inspiration. We really want to make a difference in the life of people who are suffering with MacD, and we call it MyMacDLife.
Well, hello everybody and welcome back to MyMacDLife. I’m so excited to be here with you today with our guest, Sue Labar-Yohey. Sue has quite the background. She’s a graduate of East Stroudsburg State College with a degree in psychology. She has a master’s in educational psychology and certificates as a School Psychologist and Elementary Guidance Counselor. Sue is the founder of mymacularjournal.com and also writes for maculardegeneration.net. We’re so excited to have you here with us today.
Support for today’s MyMacDLife podcast comes from Healthy Vision Association, Novartis, Prospero, Centric Bank, and Heiko Stein and Associates.
You know, Dawn, one thing that I was thinking about, that’s a really interesting concept and been mulling over the last couple of days is: when you have a struggle, such as MacD, being willing to ask for help from your friends, from your family, from your medical professionals, from the world. But people seem to be a little reluctant to ask for help. What are your thoughts about that?
Actually, yeah, get me started on that because that’s huge. It’s a huge thing. Give us a lane to take on that, asking for help. Do you ask for help?
I do, but a lot of people that I talked to say, ‘I would like to ask for help, but I don’t want to be a burden to someone else.’ If I ask someone for help, let’s ask you, Dawn, for help. If you help me, I’m not actually creating a burden for you. I’m actually creating joy for you because most people who are the helpers say, ‘It makes me feel good to help someone else.’ Even though you’re helping me, Dawn, you’re actually helping yourself, because you feel good about giving back to the world or to your community or to your neighborhood, or to your friend.
So Shawn, did you say yes, that you asked for help?
Do you do it easily?
I would say that it’s a learned behavior.
Okay, there we go. That’s a good place to start.
It’s something that I had to learn. It wasn’t something that I did originally. Do you ask for help when you need it?
Is that a learned behavior for you? Did you naturally ask for help all your life?
Learned. Well, I’m really independent. So let’s say help and helper. Right. Everyone plays both roles.
That’s exactly right.
There’s burden, which is an interesting term, like you’re carrying something that’s heavy, that weighs you down. That is almost the opposite of help.
That’s right. Okay. That’s right.
You asked for help. You had to learn it. How often do you ask for help, when you need it or just every once in a while?
A couple of times a week from someone. Whether it’s a friend or a family member or some professional colleague.
I ask for help in my work because I don’t do any of this alone. It takes a village, it takes the universe, it takes a team. You know, present company included. I asked for help when I don’t understand, something from somebody who knows the answer. I asked for help when I’m at the store. Well, I don’t go anywhere anymore because of COVID. But I ask for help when I can’t find something, or if I’m online with somebody, I have a problem with my insurance. Yeah, we all do that. Really, if you think about it, you are asking for help when you call for customer service.
That’s help. But why are people reticent, hesitant, afraid to ask for help when it comes to their vision or something they can’t do because they can’t see it.
I think it may be an effort to be, and you mentioned the word earlier, independent, instead of dependent. Because none of us would think that we’re dependent on someone else, right? We’re, again, back to the word, burden.
Right? But we are because they become our eyes and there’s nothing wrong with it. You know, one of the things that we’ve told people for a long time, and I hope our listeners are really tuning into this part, is someone cares about you. MacD affects you and everyone around you: caregivers, the family. While it’s really hard to accept, when you hear those words from that doctor that says, ‘I’m sorry’, it is macular degeneration, there’s another we can do about it,’ which I cringe but there is a lot you can do and that’s why we’re doing this podcast. But one of the things that people need to understand is, it’s just like everything else. If you can’t walk up the steps because your legs broken, because people can see that your legs broken, they know you need help, and they’ll help you. If you can’t walk up the steps, because you can’t see where they are, and then you’re going to fall and break your leg? You damn well better ask for help. It’s okay.
The supports not visible the same way as if you had a broken leg, that’s a very good point.
Right, we have to get on with the show, but I love that you bring this stuff up because you’re always mulling.
I’m always mulling.
Asking for help, I believe, now I’m speaking as a woman and I’m not trying to be sexist here, but I think it’s hard for women to ask for help, because we’re supposed to be able to do everything. But it’s also difficult, and you tell me, I have lots of men in my life, happily, unhappily. But men don’t like to ask for help, either because I believe that society sees it as a weakness.
Yes, I think men have the gender disposition towards, ‘I must be strong and not ask for help because I’ve asked for help that makes me weak.’ That’s my perception for where I stand as a man.
Right? But you asked for help, so you obviously understand how important it is. It doesn’t make you feel any less of a man than you are, Shawn, because you’re just wide open. Asking for help actually is part of being humble. It says that you don’t know everything, and you cannot do everything, because nobody can. When you ask somebody to understand something better, or to help you carry the heavy bag that you’re carrying, or whatever, all it means is that you need assistance, you can’t finish it, or I don’t know, I’m not making sense right now. But you get what I’m saying. It’s actually friendship. It’s actually positive. Like you said, it’s joyful.
Most people, 99.9999999% of people, if asked for help, will say, ‘Sure, what do you need?’ It’s amazing.
You know what I say many times a day in my role as a patient advocate, and an expert in macular degeneration, and somebody who cares deeply about the patients and the people who suffer from it, whose lives are changed forever? I say in fact, I just typed it before we got on the show – I say, ‘I’m happy to help you. What do you need?’
Yes. How can I help? So those of you listening, those who have suffering from MacD, those of you who are family members of MacD, be willing to ask for help, be willing to give help.
Try it. Try it.
Practice, practice baby steps, right because it can really be life changing.
There’s no reason to be afraid of it.
Welcome to the show. We’re so excited to have our guest here today, Sue Labar-Yohey. Welcome to that MyMacDLife.
Thank you. Thank you for having me.
And Sue has quite the background. She’s a graduate of East Stroudsburg State College with a degree in psychology. She has a master’s in educational psychology and certificates as a School Psychologist and Elementary Guidance Counselor, and spent 38 years in the field of psychology, which I found really interesting. But –
actually that’s more like 42.
How time flies, doesn’t it?
Oh, when you’re having fun.
That’s right, Sue is the founder of mymacularjournal.com and also writes for maculardegeneration.net. So Sue, welcome. We’re so excited to have you.
I’m actually the co-founder, I did the easy work of going blind. My friend, my friend, Linda Moore, did all of the rest of it.
Oh, wow. Okay, so you’re the co-founder with Linda Moore.
Great. Well, we’ll give credit where credit’s due. A lot of things really struck me about you reading a lot of your work, your writing is really poignant. To me, it really packs a punch. So my first question, I’m really curious about what led you to start writing about your journey with age related macular degeneration?
Well, as a psychologist, one of the most powerful things you can do is journal or tell your story. So when I started to… well, actually, it wasn’t a matter of started. When my second eye just went practically overnight, it seemed to me, I needed a way to express myself. And I said to Lin, ‘How about we do a blog? Because I’d like to write about this.’ That’s essentially why I started, I started out more as a psychologist, heal thyself thing.
Okay. Yeah. So it was really for you at first.
It was for me. Yeah, and, if you get a little extra benefit for somebody else, that’s great, too.
Was there a point for you where it seemed to transition from your own journey? Writing about it for yourself to helping others was there kind of a tipping point for you?
Well, I can’t actually tell you where the tipping point was, but I know that there came a time that what I was writing about was actually not relevant to a lot of the people that Lin has in her Facebook group. I guess that maybe was the point that I realized I had grown beyond where people were when they started out. I was trying to write for others and give them hope. But sometimes it was a matter of, well, ‘who are you to say you’re way beyond us?’ As far as, you know, adaptations.
When did you launch the mymacularjournal.com site?
That was pretty much right after, like I said, I had my second eye go, and that was in the end of January and 2016. I started writing, and it just grew from there. Like I said, Lin had great ideas for it.
Wow. So it’s really a partnership between you and Linda. She had great ideas, you had the passion, you had the experience, the background, and off you went.
Yeah, I was the one that was going blind.
If you don’t mind, why don’t you tell listeners your story. Tell us about how you arrived at this place, with this journey with MacD.
Back in like 2015. It’s hard to believe it’s actually been over five years now. But back in 2015, I was driving down the street, it’s summer, all the windows are open. I’m not an air conditioning person. Something flew into my right eye. When I went to close my eye, and did whatever it was, you know, wipe whatever it was out of my eye, the car in front of me disappeared.
Oh. That’s scary.
That was like, ‘Oh, crap.’ So, I called the hospital. I called and they said, ‘Come in right away, come in right away.’ And I’m thinking, you know, okay, so I have a little blind spot, nothing big. But then he told me it was macular degeneration, and I was losing my vision, and that it would be very, very slow. And, you know, essentially no worries. But then in January, I was skiing, drove myself to the slopes, skied all day, drove myself home, came home and woke up the next morning, and I had lost a lot of sight. You’re told that macular degeneration is a very slow process that it takes forever and all that. I don’t know why mine was practically overnight. But, you know, they said potentially, it was because some of my blind spots had actually grown together. So from there it was a little bit of a rough patch for a while. I could no longer drive; I haven’t driven in five years. I don’t intend to kill anybody because of my selfishness. A lot of people won’t like that statement. But I will not hurt anybody, because I just want to drive. I’ll find another way.
I think that’s actually very nice of you.
Well, yeah, when you can’t see what’s in front of you, that’s a problem.
You know, so like I said, it was rough for a while. I had to take leave from work. But because I am a psychologist, and because, not the job that I have now, but my original job was as a school psychologist, which is working with people with special needs, I had a really good idea of where to go. So I called Bureau of Blindness and Visual Services, and said, ‘I need help. I need help now. I’m going to drive you insane until you give me help.’ So he gave me a few assignments. Alan Curtis and I worked very well together. He has since retired but he’s a great guy. So shout out there, but I got the information I needed. I got the materials I needed. I went back to work. That’s basically it. I mean, there was a lot of times I was waking up four or five times a night with panic attacks.
Yeah. That’s that understandable. You lose your central vision, that’s what happens, right?
Yeah. I mean, that got solved with good drugs.
One of the quotes that really struck me on your site is about the bear hunt. I would really love for you to clarify what this means because I was just really taken back by this quote.
We’re going on a bear hunt. Can’t go over, can’t go under it, got to go through it.
What does that mean in your perspective?
You don’t spend a lot of time in preschools, do you?
I do not. I train adults.
Well, part of my job when I was working as a school psychologist was to go to preschools and evaluate children who were coming into schools, kids with special needs. Going on a bear hunt is a standard in preschools. It’s, ‘going on a bear hunt. I’ve got my binoculars, I’ve got this, I’ve got that.’ All the kids are saying it in chorus. You go through the woods, you go through the river, and you go through whatever. But then, it’s a river, can’t go over it, can’t go under it, got to go through it. Eventually, they come to the cave, can’t go over it, can’t go under it, got to go through it. You walk into the cave and you find the bear, the kids turn around and they run, and they go they splash across the river, and they go through the weeds, and they get home. Age related macular degeneration; you can’t go over. You can’t go under it. You got to go through it.
I think that’s a very refreshing perspective. I think a lot of times when people face adversity, they want to avoid it or sweep it under the rug or make it go away.
I am a psychologist. What I’m doing right now is therapy. So you don’t need to tell me.
In your opinion, what do you think is the biggest challenge that people face with MacD?
I think it’s acceptance. If you look at what wrote, you know that I am a practitioner of dialectic behavioral therapy. Dialectic behavioral therapy is very big on reality. This is the situation that you’re in, you’re not in a situation that you want to be in. You’re not in the situation that you should be in. But this is a situation that you’re in, and what are you going to do about it?
That really comes through in all of your writing. That statement of, ‘here’s where I am, here’s what I have to accept.’ Now, what? Now what do we do?
Now what do we do? How can I solve this problem with the situation that I’m in, with the resources that I have? And you may not solve the problem, but you may cope with a problem, you may tolerate the problem.
Yeah, that makes a lot of sense.
That’s sometimes what you do, you tolerate. Do the best with what you got.
I hear this term often when people are in grief, ‘the new normal.’ Is that kind of analogous to what you’re talking about ‘the new normal.’
People have been doing it, you know, not to bring up the big topic, but COVID. This is the new normal right now and people are struggling with accepting it.
For a long time.
For a long time. Yeah.
We’re going on a whole year of this.
I mean, it will be at the end of March. It’ll be a year since I actually saw clients in the office.
Yeah, but thank God, we have Zoom.
Yes, absolutely. All the technology we have, imagine years ago if we didn’t have the technology.
You know, you make do with what you got.
So, for our listeners, what advice you have for listeners who are newly diagnosed with MacD from where you sit?
I think you have to come back to the acceptance. This is where you are, you need to make the best of what you have and the situation that you’re in. Also it is not as bad as you think it’s going to be. These are not the words, but this was the attitude that I sort of encountered some places. You’ve got macular degeneration, it’s dry. There’s no treatment, there’s no cure, you’re going blind, copay please.
Wait, that’s stunning.
Well, part of the reason I think is because they feel horrible that they can do nothing about it; doctors are healers. When they come up on a problem that they don’t know what they’re going to do with, they’re almost embarrassed, like, ‘I can’t do anything about this for you…so next. Maybe the next person, I can do something for them.’ But it’s not that bad. I mean, it has been five years, I still work. I see clients 28 hours a week. I can’t drive but I can get transportation, I can ride a bicycle. I’ve got applications that read to me, I get free books.
The benefit is you can get free books, this incredible offer free books.
Free books is right. You know, like my first CCTV, I got from Bureau of Blindness and Visual Services in Pennsylvania. It’s great as long as you’re ready to go back to work. I mean, they broke their backs for me. I’ve heard people that say, ‘Oh, we didn’t get anything.’ Well, they’re retired, they don’t want to go back to work. Blindness and Visual Services is part of OVR, which is part of Labor and Industry. They’re going to put their money where you can go back to work and pay your taxes. Cynical, but true. That’s a fact. If you can hang in there and keep working, you’re going to get more. Unfortunate to say that but, you’re going to get more. They were great to me.
That’s wonderful to hear.
I still ride my bike. One of the farmers around here stopped me the other day and goes, ‘You know you can cross country ski over my fields if you want to.’ So I’ll probably go skiing this afternoon. I walk my dogs every day, or every day the weathers decent. Life is not over.
That’s a very encouraging message. What I’m hearing you say, and correct me if I’m wrong, is obviously acceptance, but it’s also counting what you do have, your blessings.
Oh, of course. I mean, when I met my optometrist, she first told me I’d have to stop driving, and that it’s only going to get worse girl. I said, ‘Well, how am I going to get anywhere?’ She goes, ‘Ask.’ I said, ‘I don’t want to be a burden.’ And she says, ‘Oh, god, no, you’re not going to be a burden. One of the things that makes people happy is doing for others.’
It’s so true.
What she said to me is, ‘Why do you want to deprive people of the opportunity to feel good about themselves?’ We’ve had conversations, we’ll have comments on pages, that people don’t want to let anybody else know that they’re visually handicapped. I mean, sometimes it’s almost the first thing that comes out of my of my mouth. Because it’s, I’m sorry, I can’t see your face. I don’t know who you are. Please identify yourself. I don’t want to snub people.
Is there a stigma perhaps around being visually disabled that people don’t want to admit that they have that stigma? They don’t want that stigma, that label?
When you look at the Bible, look in Greco Roman history, look at the stories. What did they do when somebody sinned? The gods stripped them blind. Blindness has a stigma attached to it, and you think you think, ‘Oh, we’re so much farther along now.’ No, blindness has a stigma attached. People think it makes them weak and useless and they can’t do anything. I like chaos in my life. I keep telling myself at 67, having retired from one job, that I’m going to slow down, it hasn’t happened, it really hasn’t happened.
I love the message of acceptance. I love the message of asking. I love the message of helping people help you because it helps them feel good about themselves. That’s a great message. So what advice do you have for listeners who have family members, or friends of people who are suffering with MacD? What advice do you have for them, the supporters of people that are suffering?
I’ve said this before when interviewed for another place, but essentially, help them be themselves. I started exercising at 25. That’s my outlet, that’s what I do. I needed help getting to the gym so I could be me. If I need help to get someplace to be me, take me. If I need help making arrangements to go on vacation, which is also part of me (if stupid COVID ever gets gone). It’s help me, be me. People think that they’re giving up their lives, they’re giving up their identity, but you’re not, you just get it in a different way. You just work differently to try to get who you are.
I think that makes an abundant amount of sense.
Sometimes it’s a pain in the tush, to people around you. You have be aware of that too. You have to not lean on the same people all the time.
So I noticed that a lot of your writing has a particular through line of humor. You’re funny.
When people tell me that I really don’t necessarily see it.
When you said you wanted to be the best lab rat ever, like the best, best best best best lab rat. I mean, that’s everybody’s stuff.
Okay, if you say so, but it’s the truth, I want to be the best one. They don’t realize they’ve got me for life. Right now I’m in the APL-2. It is looking pretty promising.
When you look at the research they won’t tell you because of all the secrets, double blind and all that they won’t tell you what’s happening but the research says they’re getting about a 40% deduction, decrease, in the rate of the going blind, the rate of progression of the disease. So instead of going blind at 100 miles an hour, I’m going blind at 60 miles an hour. And I will take it.
This spring they’re moving me over to what I’ve always called a longitudinal study, they’re calling the long-term study, same difference. But why would they be moving us over to a study that sees how people react long term on the drug, if the drug wasn’t working? I’m getting moved over to a three year and they don’t know it yet, but I’ve invented my own study, which is, how do people with APL-2 treatments, respond to stem cell RPE treatments?
So for our listeners that are the lay person, because you obviously do a lot of research and study, what is an APL?
Oh, okay, you really want me to get into this, huh? Okay.
It’s Apellis-2. I’m not sure I can do it lay person. Basically, they put a shot in your eye. Don’t worry, you are very, very, very numbed, at least I don’t feel it. It is slow, it is taking a piece, a domino, out of the complimentary system. The more and more that they look, macular degeneration is an autoimmune problem. It’s your body attacking yourself. That’s part of what they call the compliment immune system. The compliment immune system is ancient. It is in all sorts of animals going all the way down to like lizards and everything. It is a chain reaction, a long series of dominoes. What they’re doing is knocking out a domino in the middle to slow down the chain reaction. Is that layman enough?
Yes, that’s a very good, thank you for doing that for me and for our listeners. I can understand the domino analogy and the pieces. I think that makes a lot of sense.
So they’re trying to knock out a piece in the middle to slow down the system that is attacking itself. You know, it’s autoimmune.
I said that you’re funny, but you don’t seem to realize that you’re funny. My question is, is the humor deliberate for you, as far as you’re writing to help people, or is that just a side effect of your writing?
It’s a side effect. That’s me but I don’t see it as being humorous.
I laughed often reading several of your blogs. It’s funny, funny stuff. I just wondered if humor might be helpful for people who are suffering from this?
I mean, humor is a coping mechanism. We’re back to I as a psychologist. If you can laugh, life is actually the funniest thing that’s ever going to happen to you.
I have to say, truth is much stranger than fiction.
The disasters make the best stories. I mean, nobody ever tells a story about when things went right.
Try to enjoy what happens to you and see the humor.
Having written about this for five years, you need to a lot of research and study. What specific resources or support tools do you recommend for our listeners who are suffering from MacD?
Well, I’m going to give a plug to my friend who has almost 5,000 people in her Facebook group right now. It’s Our Macular Degeneration. I mean, she did this, this came out of our blog eventually, and I’ve never had a Facebook account at all. I’m weird. Let’s face it.
At least you know you’re weird, but you’re delightfully weird though.
Well, thank you. I don’t eat peanut butter. I don’t have a Facebook account, but she has put together this amazing group, and it is very, very, very factual. You remember Schoolhouse Rock?
I do, conjunction junction what’s your function?
Yeah, we got a bill on Capitol Hill.
Yeah, you know how old are you, anyway?
Okay, well, then you are old enough.
I can even sing some of them, that’s the scary part.
At the end, they would always say, ‘because knowledge is power.’ And knowledge is power.
If you don’t know, you’re at the mercy of every snake oil salesman in the world.
So tell us how people find this Facebook page?
Okay, like I said, I’m not on Facebook. She tells me what’s happens on it. I say, ‘That’s cool. You know, you do a great job.’ Which she is. But I don’t have time for Facebook. That’s evil.
I don’t actually admire you for that. I spend about one second on Facebook a day.
In my practice, do you know how many people come in distraught because somebody didn’t like their posts on Facebook? But you didn’t hear me say that. If you go to mymacularjourney.com, there is a reference to the Facebook group.
So, mymacularjourney.com, and just look for the Facebook page, there was a header at the top of the website I saw.
Yep. She will be, well, she won’t be more than happy. She’ll probably scream at me when she gets 500 people that want to be admitted all on the same day. That’s an excellent source. I also write for Health Union. And that’s, that’s a little more compassionate, and a little more in the touchy-feely side than the science side. Also very much needed.
That’s the maculardegeneration.net site.
Yes, also very much needed. When Linda and I started putting this all together, our backgrounds are both in the soft sciences, psychology. We decided that we weren’t going to put anything in there that could not be proven, that was not scientific. It doesn’t help people to be set on wild goose chases. It really doesn’t, especially desperate people. People with AMD are very often desperate.
Yes. Do you ever do you ever think about this as being part of your legacy?
Well, yeah, why not? You make lemonade out of lemons. If you can do that, you know, why not?
I’m just thinking about the perhaps hundreds, and perhaps thousands of people that you’re helping every day reading your messages who are newly diagnosed or struggling and they read your story and go, ‘Well, if she can do that, then well, maybe I can do that.’
Like I said, I’m weird. I’m 67. People go, ‘Oh, you’re not still doing that.’ Yeah, you know, I want to go cross country street this afternoon. I’m upset that my husband hurt his shoulder and he can’t take me downhill skiing. But you can still do it. If these eyes are in a good body, you can still do it. Don’t cut yourself short. Try to still be yourself as much as you possibly can. You’ll find people to help you, you will.
Last question: what is your best advice that you would like to leave our listeners? If there was one or two things you really have to keep in mind?
Acceptance and go for help. Go for help. Do not be afraid to go for help. Ask for help. If you’re in a grocery store and you cannot see you know what’s on a shelf above you, ask for help. If you read what I’ve written, you see a thousand times, this is the best time in history to be going blind.
Can you elaborate on that concept a little bit more for our listeners the best time right now?
It’s the best time in the world, in the history of the world, to be going blind. It truly is. Let me go in by saying that people think of blind as big ‘B’ blind. They think of no light perception, no nothing. I have it on very good authority. A matter of fact, Virgilio told me this one time when I said, ‘What can I expect? Will I lose a third of my central you know of my vision?’ He goes, ‘Oh no, it’s going to be less than that. You are not going blind blind. You are losing your central vision.’ At least with dry. Does it stink? Oh, yeah, it stinks, but there are ways to get around it. Which brings me into the question you just asked.
When you look at the shots for wet macular degeneration? I’ve got it in there somewhere. But I think they’re less than 30 years old, 30 years ago. Don’t quote me because I don’t remember the exact date. But 30 years ago, nobody would have had an anti-VEGF shot because they didn’t exist. You got a bleed, you went blind. Cataracts, you know, like replacing the lens. Mr. Magoo? What do you think Mr. Magoo had?
I remember Mr. Magoo.
Mr. Magoo. They were taking the cloudy lens out, but you were coke bottle glasses. They didn’t have lens replacement. That was in the 50s and the 60s when I was a kid. Now they’ve got it. I am in a study that, really, if we can bring it to market fast enough, you notice I say we because I have so much to do with this, if we can bring it to market, we’ll be the first treatment for dry AMD. I mean, that’s exciting. I’ve got my CCTV, and I’ve got my apps on my iPad. If I want to read something I can as long as it’s a PDF, I can take it in about three steps from the article to my reader, and it reads it to me. I mean, it’s a little strange sometimes, I had it reading a book to me one time and it was about groups and participants and it just kept saying and ‘the party see pants.’
Party see pants.
But it’s better than not being able to read it all. It’s out there, you just got to go get it. I’ve got my Max TV, glasses to watch TV. I can get TV on my iPad. You know, I hide it off the end of my nose, but I can see it.
This is the best time in history to be going blind. You have more opportunities; you have more help. You have more research than they’ve ever had before.
If that doesn’t give people hope, I don’t know what would.
Yeah, basically, I’m a Pollyanna. I’m a cockeyed optimist.
Keep at it, that’s exactly how you should be. I’m a practicing optimist so I understand.
Well, Sue, thank you so much for being with us today. You’re a delight. How do people find you and connect with you?
Okay, basically, they kind of don’t. You can go my site, if you write a comment, if you want to get in contact with me, Lin will send it through. You can go to Health Union, make a comment on some of the stuff that I may have written. I’m not sure you’re going to get me because I’m not an advocate there. I just write, I don’t do any of this therapy sort of stuff. Please do reach out. Because I’m a psychologist I cannot give professional advice outside of my practice.
If it’s a crisis, or if it’s something just in general that you need to know, we can certainly get you to people that would help you. If you’re in this area, you can always come to the office.
Where do you live?
Well, Sue, thank you so much. You’re a delight. You’re bringing lots of hope and optimism for people all across the world suffering from MacD. Thank you so much for being on the show today.
Thank you for having me. Have a great day.
Here’s a practical tip for living with macular degeneration: learn to use your eyes more efficiently, learn to use a more peripheral part of your retina to see more clearly.
You know what that really means, Shawn? This is important because MacD is a central vision disease. So it’s really the center, as our listeners know. You see with your eyes; you see with your brain. You can train yourself, believe it or not, folks, you can learn new tricks here, that’s the point of these tips. You can train yourself to look through the peripheral part of your vision, so to the side, or train yourself for your eyes to move to the side or move your head. If you’re speaking with someone, or you’re looking at something, you might want to reposition your body until you learn how to do it only with your eyes. Again, just like everything else that takes practice, you really can teach yourself how to do it, as well ‘ears for eyes.’
When you say ‘ears for eyes’, what does that mean? Because I think that’s a really powerful point. Tell our listeners what you mean by ‘ears for eyes’.
It’s pretty simple. Ears for eyes means get books and magazines on tape. There’s an incredible audio library available. There are all kinds of audio books available through Amazon and iTunes and all that jazz. I’m sure folks out there are doing that. Also, there are gadgets out there like talking watches, a lot of people have trouble seeing their watch, clocks, talking scales, although I don’t know that I would want to use one of those. But anyway, talking glucometers, all kinds of things that use that text to speech technology. So that’s really ears for eyes. You can do that at any point of your vision loss. Whether you’ve just started to lose your vision, you know, your eyes get tired. So use your ears.
Dawn I’ve often thought about how fortunate we are in the modern world that all these things are available to us.
That’s right. So everyone out there remember ears for eyes and try to train yourself to use your peripheral vision.
Hey, everybody, welcome back to MyMacDLife. My name is Mike Wood with the company Vispero. I have my favorite colleague Bill Kilroy here with me as well.
Hey, glad to be back, Mike. I love the Mike and Bill show. It’s always a lot of fun.
So Bill Kilroy is the Senior Sales Director of Northeast, he’s up in the New England area. I’m Strategic Accounts Manager for Education, I cover the US for the education market. Bill and I are both from a company called Vispero, the world’s largest Assistive Tech company focused for the visually impaired. Many of you may know us by our former brands that kind of formed together to be the Vispero company. Its Freedom Scientific, Enhanced Vision, Optelec, and we’ve got a services arm which is called the Paciello Group, make sure that your websites are compliant, things like that. We’re going to talk a little bit today about some Assistive Technology. Many of you out there may or may not be aware of some of this technology so that’s what we’re here for. We’re excited that Dawn has invited us to talk on MyMacDLife.
Here is a piece of equipment, that’s going to help basically level the playing field for you, right, so everybody’s got a tool belt of different tools that they want to use. Some of the ones we’re going to talk about will help you with your vision issues. If you have any difficulties with seeing, some people might have difficulties with typing, writing, speaking, there’s all sorts of different Assistive Technologies out there for you. The product today we’re going to chat about is the omniReader®, which is by Freedom Scientific. The omniReader® is a descendant of another product line, but this version of the omniReader® is brand new, basically, it’s within the last year.
We brought it to market, and I love what we’ve done to update the unit itself. I remember the older unit and, the new one now is lighter, more portable, obviously with that weight cut down. This product is basically a portable scanning and reading device. This will take any text that you have and convert it to audio output. If you’re looking to read a newspaper, read your mail, easily just put that underneath this unit. This unit has a built-in screen; it’s got a 10-inch screen on it. If you want to see the material that you’re reading, you can enlarge it. You can change the font coloration if you need high contrast, and you can also plug in your headset. If you’re in a public area, say you take this to the library, and you’re going to be reading a book there, you can scan it in, have it read it out loud to you plug in your headset, so you’re not disturbing anybody and getting yelled out by the librarian.
They don’t like that.
I remember back in the day when I would go to the library. I’d always be getting yelled at for talking too much. The other thing on this is the buttons were changed. Joe McDaniel, another colleague of ours, and I did a webinar on this couple months back. I remember the feedback was great, because you’ve got this one large button on the top, it’s almost like the buzzer on like a game show. You quickly and easily tap that. The unit does exactly what it’s supposed to do, it just scans in the material for you, and then starts reading it right away. You can customize the speed of the voice. Again, like I said, you can customize the size of the font, the coloration of the font, it’s got a built-in handle on the top. It’s very portable, lightweight, battery powered, this thing weighs just over three pounds, it’s like 3.3 pounds. You’ve got, I mentioned earlier, the audio jack, or if you want to plug in external speakers, if you really want to have you know, loud booming audio. But I do want to say I actually sold one of these to a good friend of mine, that was having a hard time reading cookbooks. I said to her, “Let’s give it a try.” Recipes are always difficult, when you’re doing scanning and reading, because you’ve got columns, you’ve got the recipe ingredients. So I said, “Give it a whirl, see if it helps.” She tried some other products on the market. She got the omniReader®, and she called me right up said, “I love it. I want it.” So I sent it to her for a trial. A couple days later, she called and said, “Where do I send my check?” That just goes to show the design of the scanning capability is spectacular. That built in handle again, it’s just easy, you can take it with you easy to travel, doesn’t take up much desk space either. You can keep it up on your table.
The set the size of this reminds me of like the old all in one encyclopedias that were like, you know, two or three inches deep. When you stood it on, and it would stand about, I don’t know, 10, 12 inches high. That’s what this unit is like. I mean, the weight, it’s much lighter, three pounds. When I think of something like the omniReader®, I think of my aunt who could have really benefited from a good scanning and reading piece of technology like this, because she did have a desktop video magnifier, but her macular degeneration got so bad that, she could see certain things, but her functional vision wasn’t good enough for reading. She was struggling paying the bills. This is a device that, the Verizon bill comes in, or the AT&T bill comes in, you just scan through it, column by column, and find out the total, set up your auto pay and boom, you’re paying your bills.
I think that’s a great point. I remember a couple weeks back; I was talking to a colleague of ours that was talking about how they use something like this. The design is really ergonomic, because remember, on the back of this unit, you’ve got to indentation. If you were sitting in your chair, sitting at home in your recliner, it sits nice and flat in your legs, it’s got the grooves in there to sit on your legs, right, so it’s comfortable. But you want to read your mail, you can scan in your documents, save it onto this unit. Then you can go down and sit at your recliner or your table and look back over and be comfortable. You can scan in a bunch of material, whether it be mail, whether it be a magazine, and you’re portable. Again, you take this wherever you want to go.
The unit itself here, it’s basically its own guide, you place the print material right up against the unit. It has the camera capability, can look down and see that full 8.5 by 11 sized document, whether it’s one side of a magazine, or actually you can catch two sides of a small print novel and capture that information. The technology today is so rapid with these high megapixel cameras that snaps it and within probably 20 seconds you’re reading. The functionality and the versatility are great. Just like some other devices that we’ve talked about with OCR, multilingual capability when it comes to speech recognition. I can just run through some of the languages here: obviously English, Danish, Dutch, French, German, Portuguese, Russian, Spanish, Czech, Finnish, Hungarian, Italian, Norwegian, Polish, Slovak, Swedish, Turkish; male, female voices, and all of those things. There’s a lot of people that are multilingual and they still get documents in the old native language that they want to be able to scan in and hear spoken authentically, and that’s what the speech engines can do in a product like omniReader®.
Yeah, I also think it’s kind of fun because in the English language, you’ve got American accent, Australian accent, British, and Indian. I know that some of the customers that I’ve worked with in the past, if they’re reading, say, Harry Potter or Sherlock Holmes, it’s kind of fun, you can switch it over to the British accent, and it just makes it feel that much more authentic, so you can have fun with them. This unit has a two-year warranty. I think one of the things I would like to mention is just the robustness of our products, they’re made to be solid, and to last a long time for you. That’s another great thing with Freedom Scientific products.
I agree. I mean, again, we say it every time. It’s the functionality combined with the durability, and particularly these products that that are traveling with the user. What’s our mantra, Mike? If you take good care of it will take good care of you. That’s how you measure a lot of these devices is the functionality and how well it can stand up over time. I will say that Vispero and all the brands, Freedom Scientific, Optelec, Enhanced Vision, all of us manufacturing these devices, excellent track record in the field. I think why people seek us out half the time.
Hey, you know, Bill, I’m sure everyone out there is asking, ‘How can I get one of these and what’s this going to cost me right?’ So the retail price on the omniReader® is $2,495.
Mike, if you want to learn more, what do we tell people, we direct them to www.vispero.com. You can link to all the pages from Freedom Scientific, Enhanced Vision, and Optelec. If you just want to go to Freedom Scientific and see the omniReader®, go to www.freedomscientific.com, find the low vision product link and choose omniReader®.
Yes, absolutely. I know we’re probably going to be doing some live demos of that coming up soon too. I would recommend if you do go to www.vispero.com, sign up for the newsletters to see what’s happening and some of our live demos. Then of course always check out MyMacDLife.org to see what we’ve got going on there. It’s great partnership that we’re working here on the podcasts as well.
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Hey, everyone, thank you so much for spending time with us today. We’re really glad you’re here. Please come back. May 2021 be joyful, healthful, peaceful, hopeful and kindful.
It’s definitely a privilege and a pleasure. Remember, for more information please go to MyMacDLife.org we have all sorts of resources and info there for patients who have MacD and their families and remember to join us next time on MyMacDLife.
This program is empowered by The SupportSight Foundation. The SupportSight Foundation mission is to save sight for millions of people who suffer from age related macular degeneration, AMD, and lose their process vision. As a 501c3 public charity, our goal is to provide patient education and access to low vision resources to help individuals, families, and caregivers whose lives are severely impacted by AMD. We place a high priority on connecting with people, their families, and loved ones who live with the daily struggle of impaired vision. The SupportSight Foundation funds innovative research projects conducted by the top scientists in the field who are on a path to discover effective new tools, technology, and treatments for people like you with vision loss. The SupportSight Foundation, www.supportsight.org, or call us at 888-681-8773 and connect with us on social media. Thank you.
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* Note: All listed transcript timings and wording are approximations.