S2E5: Cassidy Collins – My Dad has MacD

In this episode, Marcela Salmon speaks with Cassidy about growing up with a father, uncle and aunt with macular degeneration. Cassidy has lived around MacD for her entire life. She became aware of her father’s condition during a trip to Colorado when she realized her father couldn’t read things easily and she would help.

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In this episode…

In this episode, Marcela Salmon speaks with Cassidy about growing up with a father, uncle and aunt with macular degeneration. Cassidy has lived around MacD for her entire life. She became aware of her father’s condition during a trip to Colorado when she realized her father couldn’t read things easily and she would help.

Her father first worked for Vispero, then for LVI, a company based in Sweden that sells products to help legally blind people. When LVI expanded to the United States, her father became the chief marketing sales director for the United States division. Her father never viewed himself as having a handicap. In fact, his disability made him even more successful in life and opened the door to helping others find success as well.

One of the inspiring things Cassidy’s father did was write a book called Tripping Into The Light about his journey growing up with Stargardt’s juvenile macular degeneration and how he has been successful in life.

As the story goes, Cassidy’s grandmother took her father and his three siblings to a hospital in Massachusetts to get tested for their eyesight. The doctor proclaimed their eyesight would get progressively worse and proceeded to write a list of all the things they could and could not do in life, including skiing and snowboarding. Leaving the office, his grandmother threw the notes in the trash and the rest is history – Cassidy’s uncle became a ski instructor in Colorado and her father became an entrepreneurial success. Her grandmother made sure the disease would not hold her children back from pursuing whatever they wanted in life.

Cassidy explains that her father uses a CCTV that reads to him or magnifies things for him as he only has peripheral vision. Cassidy tells Marcela that her father has learned how to train his eyes to look straight at you when he’s talking rather than peering from the side of his eye.

Cassidy explains that this adaptability and entrepreneurial spirit is one of the driving factors to his father’s success, and an inspiration to her.

As a caregiver Cassidy says learned when to step in and help and when to back off, and that she thinks patience is the key to aiding people with MacD. She stresses how important this is for independent people like her father, who get easily frustrated when they want to do things on their own, but can’t. They also don’t like to be approached by strangers and assisted without first knowing what is going on. Cassidy references an example of the time two people lifted up Cassidy’s father to help him cross a street.

This episode focuses on what it’s like to be a caregiver and how you tend to notice everyday things differently, like restaurant lighting, going to the movies; even the monotone colors of carpeted stairs, which can be tricky to navigate for a person with macular degeneration.

Luckily Cassidy’s father is very open and even lighthearted about having MacD. He has accepted his eye disease and often speaks out, making suggestions that would improve his surroundings. He can laugh about his shortcomings and puts his energy into reading “how to” informational and nutritional books for self-actualization. Cassidy’s father now runs a nonprofit called “The Thriving Blind Academy,” where he teaches the principles of success.

Bill Kilroy of Vispero shares information on the Freedom Scientific Topaz line of desktop video magnifiers. These devices sit on a desk with a video magnification system that includes a camera monitor and an X Y table. The monitor sizes range from 20, 22 or 24 inches. It’s versatile, with the ability to swing left or right, raise or lower depending on your height.  It allows for someone with notes to be able to move those notes around and be able to magnify what they need. Because these devices have a bigger monitor, they can magnify more information on a page at a time. There’s less mental processing to put the characters into words, the words into sentences, the sentences into paragraphs, and you can use these devices for longer periods of time than a handheld magnifier.

It also allows the user who might want to pause on reading a chapter to start scanning pages so that they can sit back and listen to what’s being read.  The Topaz OCR is a great choice to have and goes above and beyond the OCR capability.

To learn more about the Topaz or the Merlin, there are two ways to get in touch. Go online and type in www.vispero.com or call our toll free number at 1-800-444-4443 and speak to one of our customer service representatives. You can tell them what you’re interested in, they can guide you through some of the products and can connect you with a local resource that can help you in your home or schedule an appointment to potentially come to their showroom and learn more about these products and test drive one for yourself.

Full Disclosure:  Cassidy Collins is the eldest daughter and a caregiver to her father Charlie Collins. Charlie Collins is a member of The SupportSight Foundation board of directors. In compliance with TSSF governance policies, members of his immediate family (daughter) did not receive any direct financial benefit for her guest appearance on this podcast.

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Transcription excerpts from this episode

00:03

Welcome to MyMacDLife, empowered by The Support Sight Foundation. This podcast is about macular degeneration and the devastating impact it has on millions of people and their families every single day, 365 days a year. Our mission is simple –  to bring hope, optimism, perspective and education to our listeners. So tune in, buckle up and put your listening ears on.

00:31

Hi, I’m Dawn Prall, Founder and Executive Director of The Support Sight Foundation.

MyMacDLife, the podcast you’re listening to and tuning into right now, is empowered by The Support Sight Foundation. We are a voice you can trust. MyMacDLife is the first podcast series about how to live your best life with macular degeneration.

01:01

My MacDLife podcast is generously supported by Regeneron.

01:10

Cassidy, welcome. Thank you so much for being here with us.

01:14

Thank you for having me.

01:16

I’m really excited to hear about your experience. But let’s start with when you first became aware of macular degeneration.

01:25

I was born into it because my father has macular degeneration. I think around age 10. Third, fourth, fifth grade was when I started to realize, okay, [dad] can’t see that. My mom always kind of integrated it. Dad can’t see this. Can you help him? Read it to him? And then as I got older, I started understanding it more clearly.

01:58

At what point did you begin to transition into caregiving, or helping out more actively?

02:05

It started when I was pretty young. Like second or third grade. My very first trip I took with him in third grade, we went to Denver, Colorado. He taught me how to ski because his brother is also legally blind and has macular degeneration. He was a ski instructor at one of the best mountains in Colorado. He went skiing with my cousins. My uncle taught me how to ski. It’s just crazy how this guy, who has macular degeneration, is out skiing with my cousins, and his brother, who also has macular degeneration, is teaching me how to ski.

03:01

Oh, my God. Yes.

03:03

It was crazy. But it was also, going into the airport for the first time with him and reading things to him that he needs to see or helping him find something. That trip was the first time I was like, okay, I need to step in and start helping.

03:27

Were you aware at a young age that not everyone helped out their parents in the same way? Or is that something you came to learn?

03:36

That was something I came to learn when I was younger, Because obviously, I was the only child in my school that had a father who was legally blind. When I talked to my friends about it, they didn’t have the same interactions with their parents as I did.

03:58

Is it just you or do you have siblings as well?

04:01

I have a sister. She is two years younger than me. I was more aware of it because I was two years older, but I helped teach her how to help out with things.

04:16

Once you got older and started being more active…in high school and college, how did this influence your life as a young person going through the world?

04:31

My dad opened a business in 1998. It was called Vision Dynamics. He sold products to help people like him who are legally blind or completely blind. So I grew up going there, not only helping him, but helping other blind people. In high school, he sold the business. He went to work for a few other companies in the same business. He worked for VISPERO. Then he went to work for LBI, a company based in Sweden. They all sell products to help legally blind people. The LBI wanted to expand to the United States. So he ran the United States division of LDI. He was the chief marketing sales director. Throughout that whole journey, it just proves how independent and how someone who is legally blind and has macular degeneration, never stops.

06:01

MyMacDLife podcast is brought to you in part by Centric Bank, Healthy Vision Association, Finkelstein and Associates, Novartis, Regeneron, VISPERO, and from anonymous donors.

06:19

It sounds like your dad is a very proactive person.

06:23

He is extremely proactive. He does not let you call it a handicap.

06:33

And not only that, he also finds ways to help others.

06:37

Exactly. Yes.

06:41

That must have been tremendously influential for you and your sister, I imagine.

It was.

06:47

Well, it still is to this day. I remember in high school, I started going on trips with him. He would speak at these events. Because he wrote a book called “Tripping Into The Light.” It’s his journey growing up with this eye disease and how he has made it in life. It’s a truly inspirational and motivational story. Dawn connected with him and asked him to go and speak at certain events she was having. So I would go with him. Our last one was in Cape Cod, when I was in high school. We drove there. I helped run the events and check the people in and take pictures and talk to people. It was truly a great experience.

07:48

And how old were you when this happened?

07:51

I think I was 16 or seventeen.

08:10

His whole story. It could be a movie.

08:13

I love the title. That’s really great.  And so now, are you still working with your dad? Or what is it that you do now?

08:22

I just moved to Florida from Connecticut, which is where my parents are. I’m working at a country club as a Merchandise Manager, which I enjoy. I love it. It has pained me to leave them. I’m very sad about it. I miss them a lot. And my mom does miss my help. But they’re making it.

08:52

Does he use any sort of assistive technology or software?

08:56

He does. I’m not sure of the exact name of the program he uses on his computer, but it loads up the text so he can read it. He also has a CCTV where it can either read to him, or it magnifies it and he can read it himself. But with macular degeneration, he doesn’t have central vision. He has peripheral vision. When he’s reading, he reads out of the side of his eye. He talks to you out of the side of his eye. He has found a way to talk to people without making it look like he is completely looking out the side of his eye. He talks normally while having a conversation. He’s trained his eyes to look straight at you.

09:56

That’s fascinating. Have you observed him in any situation where you’re watching the dynamic?

10:13

Yes. Sometimes I compare him to his siblings. He is one of six kids. Four out of six of the kids have macular degeneration. So I compare him to his other three siblings. He has put in the time and effort to train his eyes in a certain way. They all do things differently. How they read or how they cook or clean or whatever they’re doing. In comparing him to the other three who have it, he is much better off.

11:11

Do you think the differences are mainly due to personality traits, or perhaps vocationally, since you mentioned, your dad has an entrepreneurial mind.

11:22

I would definitely say it’s his entrepreneurial mind that has helped how he adapts, and with his eyesight.

11:35

MyMacDLife Podcast is a national award winner of the step program for innovative macular degeneration, patient education, and for demonstrating a commitment to addressing the daily needs of people with age related macular degeneration.

11:52

He sounds like a really interesting guy, I’m going to be looking out for that movie. Is there anything that you learned that you would like to share with people that are starting on the caregiving path?

12:19

The number one thing is to have patience because my dad does get frustrated, just like his siblings do, when they can’t figure out where the screw goes, or they can’t read this tiny little print, or they’re in the grocery store, and they’re looking for something specific and they can’t find it. My dad has a tendency to be independent. He wants to be independent. So when you try to help him do something, he gets frustrated because he wants to do it on his own. So number one thing is having patience. Okay, let him try and do it first. Then step in, and help.

13:18

Accessibility is such a big thing. I’m going to include myself here, because I was a caregiver to my dad, later in life, and I remember navigating the world differently. You start to notice things. One of my pet peeves was how dark some restaurants are.

13:41

Oh, yes, the lighting in my house back home. We have the brightest LED lights, because for the type of identities that he has, more light is better. Because he used to travel for his job, he used to complain about the lighting in the hotel. So now when I go to hotels, I [notice] the lighting isn’t too nice. Or when I’m at a new restaurant, or we’re walking up the stairs, if it’s one color, it blends in to him. He has to feel with his foot where the next step is. He doesn’t look down. He does it by the feel of the spot. So I wonder what my dad would do if he was here. They are not accessible to a legally blind person.

14:51

So many different, simple things that I think some of us take for granted. You know, like going to a movie. And I remember my dad needing to go to the restroom in the middle of the movie and my dad had vision problems, not macular degeneration.

How proactive do you feel as someone in your father’s position, and then as a caregiver? Did you find it easier because you had your dad’s example, when you started helping him out? Or, what was your personality like compared to your dads, in terms of approaching this and having to speak up?

15:43

Now that I’m older, I’m more used to it. It’s my nature. Back then it was tougher. He was compared to his other siblings. He is very open that he has macular degeneration. His other siblings sometimes aren’t. They want to be independent and don’t want to say anything to let them know they’re struggling. My dad has accepted his eye disease and he lives with it. He speaks up. “You know, this would be nice if you had better lighting, to make it accessible for someone who has macular degeneration or any sort of eye disease…”

16:36

Then hope that they will listen. In terms of representation, because we have become a society where so much of our time is spent consuming content, online, on television, on our phones, a lot of that escapism has come through storytelling, which has a valuable role. But one of the things that comes up is the need for representation of every kind of diversity.

Does he enjoy watching a show and watching a movie as well? Or different types of entertainment?

17:23

He loves to watch Netflix shows, action shows. But he has to be a few inches away from the screen to see it. During the day, he is constantly on YouTube. How to do that, how to better myself this way. He is a machine for learning and reading books. He reads a ton of books. He doesn’t actually read them. He’s really into motivational, inspirational books, and very into health and wellness. He studies the brain. And he studies nutrition.

18:20

And since he’s an author himself, has he recorded his own book?

18:25

Yes, someone he knows did it for him. So yes, there is an audio version of his book.

18:35

That’s exciting. I’m going to look that up. I’m a huge audible fan.

18:55

So let me ask you something else that a lot of people will relate to. Of course, we’ve all heard the saying, “Laughter is the best medicine.” What are some moments that you and your dad have had that are just fun anecdotes that you would like to share?

19:16

As I said, he is extremely independent and has accepted his eye disease. So when he trips over something, or he doesn’t read it correctly, we laugh it off. We laugh it off like no other. And, he does not care when I’m talking to my friends or a family friend or someone about him. They say oh, you don’t want your dad to see that! And I say well, he can’t see it anyway! They say, ‘Why would you say that Cassidy?! But, he wants us to laugh about it. Because he can’t drive, he has never had a driver’s license and has always wanted to drive, he lets my mother-in-law drive. He picks out all the cars that she drives. They all have nice engines. Very loud cars. They’re fast. They’re sporty. I remember one snowstorm we had a Dodge Ram truck. He wanted to do donuts in the truck. We took the truck down to a local parking lot. It was less than a mile away from my house. And he got in the truck and he did. It was unbelievable.

21:19

And he was driving.

21:20

He was driving. Yes, it was dark out. It was just me, my sister and him. It was just a small little parking lot. He took the car in the snowstorm and did donuts. That’s why, when I show people that video, they’re like, your dad has macular degeneration?! Yes, he did.

21:48

Wait, there’s a video? Where can we see this video? This is great.

21:54

I have many videos.

21:58

The more I hear about your Dad, it sounds like he should have his own account. I feel like he would have a lot to share. Is that something he’s considered?

22:12

He has started a new company. It’s a nonprofit organization called “The Thriving Blind Academy.” He’s been teaching people like you and me and whoever else wants to join in on the podcast, how to live with people with macular degeneration. He’s teaching success principles and that this eye disease shouldn’t hold you back. You can be successful in anything you want to do.

22:53

That’s great. That’s such an important message right now.

23:09

Have you started to notice how some of your experience working with your dad and being around your family dynamic has informed how you function as a professional?

23:24

I would say my experiences with my Dad have had an impact on my professional life. How I treat people and deal with people. It has helped me be more patient, not just with people who have an eye disease, but with anyone. That’s probably the number one thing – patience.

23:59

I would imagine there’s an aspect of growing up…[learning] to pay attention to other people.

24:17

Yes, it’s more in my sister. It’s in our nature to step in. When someone needs help with something, like when my uncle comes to visit…“Uncle George, do you need a ride somewhere?” Or he’s trying to read something on his phone. “Let me read it for you.”

I think it’s in our nature to step in when someone needs help.

24:51

That’s really great. Well, Cassidy, is there anything else that you would like to share with an audience that is interested in all things macular degeneration and knowing that some are caregivers and some have macular degeneration themselves.

25:08

If you are a caregiver, just be there for them. I want my Dad to be an example to these people. He is a successful author, business owner, and he’s happy. I want him to be an example to people that are either taking care of someone with it, or [for] people that have it. Don’t stop.

26:21

Even [for] people who don’t have macular degeneration, [this] is such a valuable message. Thank you so much. And thank you for sharing your experience.

26:29

Of course. He is an inspiration to me every single day. If I need to call someone and have them lift my spirits, it is him. He is an inspiration to every single person I know. When they hear about him they are in awe.

Also what it’s [like] driving blind. Everything was a positive spin. It just speaks to what you’ve said about him. Because we’ve been talking about the importance of being helpful, I remember some of the students I worked with at the School for the Blind saying how difficult and awful [it is] when people are too helpful.

27:26

Yes. Sometimes my sister and I have been too helpful. So I have also learned to take a step back. If I see him doing a project around the house, [I’ll] let him figure it out first. Then, if he needs help, [I’ll] go ask. Before, I have said, let me help with this. And he’s like, No, I can do it on my own. Most of the time, he does it on his own. But if it comes down to “can you read me the directions on how to do this around the house?”

28:12

Sure. Right. I knew students who navigate the world with a cane. And they told me stories of strangers picking them up and carrying them across a crosswalk being helpful. You don’t know if you’re being kidnapped. Strange people are picking [you] up or someone [is] grabbing you without consent. I don’t understand that. Why wouldn’t [you] address the person first?

28:57

He was very scared. He legitimately thought he was. He said two guys just picked him up. He’s this little guy. There’s one on each side. They were being helpful, but [he] was terrified. I was terrified [of] them. Anyone would be. So there [are] different degrees in terms of macular degeneration…

29:21

…So he has Stargardt’s juvenile macular degeneration. It is hereditary. Around the age of eight or nine, he started to notice he couldn’t see the chalkboard. He couldn’t see the tests he was taking. It was getting hard for him and his other siblings were noticing the same thing because two of them are older. [He] and his younger sister have that as well. So my grandmother took them to a hospital in Massachusetts. They did test after test after test on the kids because they had no idea what it was. Then they finally got to the point at the end of the testing, and the doctor said, ‘your four kids have Stargardt’s juvenile macular degeneration. There are two types: dry and wet macular. They are dry, so they won’t go all the way blind. But their eyesight gets worse every year. When he was 20, his sight was a lot better than now. We can tell because he gets more frustrated with his eyesight.

At the end of their testing, the doctor gave my grandmother this list. It was everything that kids can and can’t do. You can’t ski, you can’t snowboard. They can’t do this. My grandmother crinkled up that piece of paper and threw it in the trash. These kids are going to do whatever they want. And that’s how she raised them. She did not let this hold them back.

31:44

On a completely different note. I’m just curious. What’s the dream? You went through entrepreneurial training? You’re at this great resort, but…what’s the dream?

32:00

I think eventually I want to start my own business and work for myself. I’m not sure what exactly but I would also love to work with my Dad. Yes, he gets annoying sometimes, but he’s great to work with. He is awesome because he’s got so much knowledge on every topic of business.  Once he gets The Thriving Blind Academy off and running, we will either start something together or I’ll work with him on whatever he needs.

32:53

Or you can start something like where one branch of it involves you collaborating with your Dad.

33:00

Exactly. Another part of my job down here is, if I’m out at a restaurant, or at work meeting the new members or meeting new people when I’m out, I am always talking about him. Always. Because I love to share his story because of how proud I am.

33:46

Again, I want to thank The Support Sight Foundation and the MyMacDLife podcast folks for allowing VISPERO, myself, Bill Killroy, the Northeast sales director and Mike Wood, our strategic sales manager for education, to share some information on our products today. Unfortunately Mike can’t join us this session.

We’ll be sharing some information on our Freedom Scientific Topaz line of Desktop Video Magnifiers. It’s a back to basics type of device for many users, and cannot only be used in the home and in schools, but it’s a great device to have in the community. Whether it’s at a town hall, a library, or some other place of public accommodation. Think of it as a larger device that is stationary. [It] sits on a desk primarily. There’s a video magnification system that includes a camera monitor and what we call an X Y table so that somebody could put down a piece of print material or form that they need to sign. They can look at it and move that information around the table. It is magnified anywhere from under two times magnification to over 60 plus in magnification.

The Topaz is a great device. It’s unique because of the way we have our control panel laid out. The control panel on The Topaz sits at the very base of the monitor. Think of the monitor as something that’s floating on an arm. On this unit you can raise or lower depending upon your height.

You could actually stand at this unit if you wanted to. It can swing left or right. We’ve seen people that have done presentations. They have their notes on the XY table. The image of those notes is magnified, yet they’re standing left or right of the monitor just looking at the monitor, and will glance over occasionally as they’re addressing their audience and doing the presentation to their magnified set of notes. It’s a great device for what I call long term reading.

Because these devices have a bigger field, ie. bigger monitor, they can magnify more information on a page at a time. There’s less mental processing to put the characters into words, the words into sentences, the sentences into paragraphs, and you can go on these devices for longer periods of time than a handheld magnifier, where the field might be five inches.

So The Topaz comes in the monitor sizes, anywhere from 20, 22 or 24 inches. These are high definition cameras, so you get a nice clear, sharp image. You have separate colors for each control magnification video enhancement mode for changing the contrast. So you can look at this in color. I can look at it [in] high contrast, white and black, black and white, 30 Plus magnet color combinations that you can utilize, and brightness control. It’s very useful in the sense that you can do so many different things on it.

I think Mike mentioned earlier with some of our handheld devices, reading a recipe, looking at your bills, writing at this device, filling out a form, writing a check, making notes, et cetera. If you’re a student, it’s a great universal device for those types of activities. Whether it’s at home, on the job, or in school, we see these types of devices everywhere. Whether it’s a Topaz magnification in 20, 22 or 24 inch, or our Topaz OCR, which in addition to giving you a live camera view, can also scan and read the document that you’re looking at. It’s a great device for dual modality and extends your usage of that device.

You can literally be reading a chapter in a book and I get to page 25 and I’m burned out. So what do I want to do? Well, I want to keep being productive. So I’m going to start scanning pages and I’m going to sit back and listen to what’s being read in this chapter and absorb it that way. And so, The Topaz OCR is a great choice to have and goes above and beyond with the OCR capability. That is a brief summary of the Topaz desktop video magnifier from Freedom Scientific.

Again, we are a company that has multiple brands. Our other two low vision organizations, Enhance Vision has The Merlin line of desktop video magnifiers, and our Optelec division has the Clear View line of desktop video magnifications.

Whether you want to learn more about The Topaz or The Merlin or The Optelec, there are two ways to get in touch with us. Go online and type in www.vispero.com or call our toll free number at 1-800-444-4443 and speak to one of our customer service representatives. You can tell them what you’re interested in, they can guide you through some of the products and can connect you with a local resource that can help you in your home or schedule an appointment to potentially come to their showroom and learn more about these products and test drive one for yourself.

40:36

Thanks for being with us on MyMacDLife, the podcast with a vision to bring hope, optimism, perspective and education to our listeners. For more information and many incredible resources, visit MyMacDLife.org. This program is supported by amazing listeners like you. Please consider a donation to keep our mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcasts. Until next time, keep living with hope.

41:20

MyMacDLife podcast is generously supported by Regeneron

* Note:

All listed transcript timings and wording are approximations.

Formatted for low vision accessibility