Season 6 Episode 14: Celestial Mysteries, Feline Lifespans and the World Beyond Sight

Ever find yourself captivated by the flickering dance of the northern lights or the serene gaze of your pet cat? Today's episode is a cosmic journey juxtaposed with the grounding presence of our feline friends. We begin under the celestial canvas, reflecting on a geomagnetic storm's nighttime spectacle and diving into the European Space Agency's research on solar campfires—could these be the key to the sun's fiery corona mystery? Then, we turn to a UK study shedding light on what influences cat longevity, offering rich insights into how we might help our pets lead longer, healthier lives.

Transitioning from the cosmic to the personal, Stephanie Duesing returns to unfold more about her son's life with Cortical Visual Impairment (CVI), a journey that redefines what it means to 'see.' His world is one where words paint pictures, and his mind's eye interprets what his physical eyes cannot. Stephanie's powerful narrative takes us into groundbreaking research on visual neuroplasticity, offering hope and understanding for CVI's invisible challenges. This episode is a testament to the resilience of the human spirit and the boundless possibilities of the mind.

As we draw this episode to a close, we revel in the heartwarming and sometimes humorous stories of our pets.

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https://stephanieduesing.com/

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Transcript

Speaker 2: 0:08

Hello science enthusiasts. My name is Jason Zukowski. I'm a high school chemistry teacher and a science communicator, but I'm also the dog dad of Bunsen and Beaker, the science dogs on social media. If you love science and you love pets, you've come to the right place. Put on your lab coat, put on your safety glasses and hold on to your tail. This is the Science Podcast. Hello and welcome back to the Science Podcast. We hope you're happy and healthy out there.

Speaker 2: 0:37

This is episode 14 of season 6. Oh, my goodness, did you all see the northern lights from that geomagnetic storm? Well, we did, and we stayed up till one o'clock in the morning staring up at the sky and marveling. Some of the photos we got were spectacular, and the thing that made me the happiest actually was folks from way South of us who would never normally get to see, and folks in the southern part of the globe got to see them as well. Very, very special, okay. Well, what's on the science podcast?

Speaker 2: 1:11

This week, chris and I break down a study about solar campfires that is loosely tied to the northern lights In pet science. We look at the longevity study and life tables that was done in the United Kingdom about cats. What were some of the conclusions, and our guest and ask an expert is the second half of the interview with Stephanie Duesing, who's talking about her son and his very unique form of blindness. All right, let's get right to the show. There's no time like science time. All right, let's get right to the show. There's no time like science time. This week in science news we're going to talk about campfires, but not just any campfires solar campfires. Hey, chris, what did you think about the Northern Lights last weekend?

Speaker 3: 1:59

I thought they were incredible. I was expecting a light show, but I wasn't expecting like a Led Zeppelin level light show.

Speaker 2: 2:08

It was psychedelic. At the peak at one o'clock I was just like in awe looking directly up at all of the lights. It was wild.

Speaker 3: 2:16

My favorite part was that Adam and I were in a full view above the house and you went to the front field thinking that you might see the lights a little bit better, but then, when you came and stood by us, you were like whoa, I was standing in the wrong spot because the I was behind the barn and the shop like we, there's this great big metal quonset on our property, um, and I was right behind it looking the wrong way and I didn't see what was happening directly behind me.

Speaker 2: 2:45

But yeah, they were pretty incredible. I don't know the last time they were that good, I think probably it was way back in 2003. I talked about this on social media where I was coming home really late from a school event and I saw the last geomagnetic storm of this magnitude and I don't think you were asleep, I'm pretty sure, at that point in 2003, there wasn't as much advertisement of things like that.

Speaker 3: 3:10

You had to be in the know, and I obviously wasn't in the know in 2003.

Speaker 2: 3:15

I didn't know. Yeah, I didn't know, and I didn't have a cell phone to take a photo of them, like that was before all that was before all of that.

Speaker 2: 3:23

Yeah, Wild. Where this is all going is talking about these campfires that are on our sun. They're actually called campfires Now they don't necessarily cause the Northern lights that we see, because that's from solar wind. It's coming from like stuff that gets burped out from our star the charged particles. That stuff bonks into our magnetic field. I've talked about this before on the science podcast, but this comes from a really special probe.

Speaker 3: 3:56

So are you talking about the discovery of campfire flares that were discovered in 2020 by the European Space Agency Solar Orbiter Probe?

Speaker 2: 4:06

Yeah, so I did talk about these before. Not only did the Solar Orbiter pick these up, but the Parker Probe another very close to the sun probe got through the corona and they found these little, teeny tiny eruptions all over the sun. Not just a few of them, but crazy amounts of them, and they're not very big. They are a millionth or a billionth of the size of the solar flares. The solar flare that caused all of the northern lights that we all marveled at in North and South America flare that solar flare was 16 earths across, and these are yeah, that's how big it was. These are teeny tiny little blips, basically like little campfires.

Speaker 2: 4:59

Yeah, that's why they're called the campfire. Compared to I don't know the, compared to the hellfire of the sun. They're just little, tiny things.

Speaker 3: 5:10

And they emit flickers of ultraviolet light.

Speaker 2: 5:13

Yeah, so they had to get close enough to see them, because these little fires were drowned out by the overall power of the sun. Nearly 80% of the campfires were preceded by a dark structure made by cool plasma, and cool plasma also precede coronal jets. This indicates that there's some kind of commonality between a campfire and a much larger coronal mass ejection. Do you remember when we saw the eclipse? Seeing the corona, chris, around seeing the corona when the eclipse happened.

Speaker 3: 5:49

Do I ever, jason? I marveled at being able to witness that in real time, in real life, for over four minutes.

Speaker 2: 5:59

I just was in awe of seeing that and the little diamonds that they call them diamonds in the corona it just was beautiful and one of the interesting things about the corona and maybe where some of the study is going is scientists really don't know why the corona is so hot compared to the rest of the sun. Like the corona can be millions and millions of degrees hot, whereas the rest of the sun, like the corona, can be millions and millions of degrees hot, whereas the surface of the sun is like not even that hot, comparatively, like 6,000 to 7,000 degrees Celsius.

Speaker 3: 6:35

So I just find it interesting that we can continue to learn more and more about the sun as our I guess our instruments become better at measuring the interesting phenomena that's by our sun where we get our heat and energy from.

Speaker 2: 6:52

It takes up a lot of space in the sky. You'd think that scientists would know the most about it because it's so big, but I was shocked. Actually, when I was looking into some of the science that was going to be happening during the eclipse, there was a whole bunch of solar scientists that were really excited because of the darkening of the sun. They'd learn more about the Corona. Now, of course, what we're talking about that wasn't discovered during the eclipse. That came from the probes that got really close to the sun. That's not necessarily a place I'd like to hop on a rocket to visit. It might be cool to go around it pretty close.

Speaker 3: 7:26

It wouldn't be cool, it would be hot. Jason, I think it's really cool that we got to witness two phenomena, one being those amazing northern lights, and then previously we did see the eclipse, so I think we are winners.

Speaker 2: 7:43

Yeah, that was a pretty lucky year so far. That's science news for this week. This week in pet science, let's check to see if cats really do have nine lives. Now, I don't really have a lot of experience with cats but, chris, you do. You grew up with cats and, like when you were before we got married and started dating, you had cats. How not to make you feel sad because you've lost some cats in your life?

Speaker 3: 8:09

but cats do live quite a bit longer than dogs and we were fortunate to have Poco, who lived to be in probably close to 20. We got her as a tiny kitten and we just loved her for a very long time. And then another cat that we had was Libby, and she also lived for a very long time. One thing that does shorten cats lives is being outside, but both Poco and Libby at times were outside inside cats, but as they got older, at times were outside inside cats, but as they got older, we kept them inside.

Speaker 2: 8:53

Yeah, so I think that happened with you guys before. Really, there was this push to keep cats inside. All of the farm cats, all of the cats are inside, like they don't have free reign to the outside world.

Speaker 3: 9:01

No, and our ginger? She's an inside cat, although she likes to be an escape artist and try to get outside. But when we take her out she is definitely on leash, or we put her in our catio.

Speaker 2: 9:12

All she wants to do is go outside and eat grass. It's super weird.

Speaker 3: 9:16

I know.

Speaker 2: 9:17

So, chris, where does this study come from? What are we going to be talking about?

Speaker 3: 9:20

I found this study in the Journal of Feline Medicine and Surgery and I thought it was interesting because it studied 7,936 cats and those were confirmed deaths in cats that were under primary veterinary care from January 1st 2019 through March 31st 2021. And they researched and broke down the data on something called life tables, and the researchers generated these life tables for the UK companion cat population overall. So this study does come from the UK and they quantified associations between mortality and traits such as sex, neuter status, breed status and body weight.

Speaker 2: 10:09

So the whole idea of this is the huge study of how long cats live and maybe the factors that change the life expectancy of the cat. Am I on the right track?

Speaker 3: 10:19

Yeah, and there are some interesting conclusions that they found. They found that crossbred cats had longer life expectancy than purebred cats, and the odds for purebred cats dying before three years of age were about two times higher than the crossbred cats.

Speaker 2: 10:39

So purebred cats maybe don't live as long. I've heard that in dogs before, but then it depends on the dog breed.

Speaker 3: 10:48

Yeah, but they're using life tables to look at data in humans as well as pets, and so that's a cross into how can these life tables help us understand human mortality. But looking at life tables tables from the UK but then also in the United States and the life tables from the Banfield pet hospitals in the United States showed longer life expectancy. Showed longer life expectancies in purebred cats than in crossbred cats.

Speaker 2: 11:19

Oh, so that's opposite. That's opposite. Why is that different? What's an idea there?

Speaker 3: 11:26

Purebred cats in the United States were mainly kept indoors and that could reduce mortality from accidents, fights and infection.

Speaker 2: 11:34

Interesting? Yeah, because we've long talked about how, like, as soon as you let a cat outside, you shorten its life Not all cats, but on the average definitely can't imagine just like letting ginger roam. There's dangerous stuff out there.

Speaker 3: 11:47

the coyotes will get her I know, I know when we first got her, she got out, we were not familiar with um being a cat owner and we just were our frivolous selves. We left the house, we got in the car, we drove and I definitely creep on the animals using our fur bow and I was sending out treats and Ginger wasn't coming for the treats and I was starting to think what is going on. And we came home and the cat wasn't in the house and I I walked outside up and down shaking the treat bag and I was so lucky, we were so lucky that she came running and I scooped her up and we brought her inside and now we've been much more vigilant at policing the door because she is an escape artist.

Speaker 2: 12:44

Yeah, she just shot out and we didn't see her, and now we catch her every single time. She does escape nearly every day, but she just goes outside the door to eat grass or hop in the snow, so she's pretty easy to catch, as long as you see that she escapes. So, aside from ginger, like what kind of dog? I don't even know what kind of cat ginger is, but this, the study looked at at all these different cat breeds. Were there some cat breeds that lived longer than other cat breeds?

Speaker 3: 13:19

Yeah, median lifespan among cat breeds was longest for the Burman cat breed, followed by the Burmese, then the Siamese, the Persian and crossbred cats, and we believe Poco was Persian.

Speaker 2: 13:35

Okay, and I know you were mentioning this, you were excited to do this study because there's one particular cat that originated in Canada that didn't do so well in the study.

Speaker 3: 13:47

It's the Sphinx cat. The Sphinx cat are a hairless breed and you're absolutely right. They originated in Ontario, Canada, where a hairless male kitten named Prune that's cute. He probably looked like a prune because they're hairless and all wrinkly.

Speaker 2: 14:04

His name was prune what Prune.

Speaker 3: 14:06

He was born in 1966. And that information is according to the Sphinx Cat Association and the Sphinx cat. They are hairless, they have their hairlessness and that is caused by a recessive gene, and so it means that they're better for those with a sensitivity to cat hair. However, they're not completely hypoallergenic, because they still produce skin cells, which is an allergen for humans so the sphinx cat is like the mr bigglesworth, after the unfreezing process in awesome powers. Yes, yes, look what you did to Mr Bigglesworth. You sound exactly like Dr Evil.

Speaker 2: 14:50

So their life expectancy wasn't great. Yeah, I think you said it was like under under seven, under six, like that's quite low.

Speaker 3: 14:58

And so more research on the mortality, health and welfare of Sphinx cats is needed due to their increasing popularity. Health and welfare of sphinx cats is needed due to their increasing popularity. Another thing that the study found was that cats with an increased body weight or being too heavy or too light negatively affected their lifespan.

Speaker 2: 15:19

So for the cat breed size being on the heavy side wasn't great.

Speaker 3: 15:25

In general, either being too heavy or being too light. Both had a negative impact, but the cat life tables provide important information for people making decisions related to cat ownership, such as adoption and timing of euthanasia.

Speaker 2: 15:45

So as somebody who hasn't lived with cats, all of this is interesting. I didn't know there was that many different cat breeds. Actually I thought every cat was just like a cat. There weren't specific cat breeds and some of them were relatively long-lived. Now I did know about the Sphinx cat because that showed up in a very popular movie, one of my favorite movies of all time. I don't know if I'd ever get a Sphinx cat, though they look creepy.

Speaker 3: 16:12

I was just wondering about how you would do with a Sphinx cat, because we would still have to have the food that we have ginger on to reduce your allergy.

Speaker 2: 16:23

I think I would dress it up like a like ET and put it in like a basket and ride around with it in a bike, Because they look like. Et, don't they? They look wrinkly like ET.

Speaker 3: 16:35

Yes, I think that would be your Halloween costume.

Speaker 2: 16:37

Reese's Pieces.

Speaker 3: 16:39

For the rest of time. That would be your Halloween costume.

Speaker 2: 16:42

That'd be an easy cosplay costume. I don't know if the cat would sit in the basket, though.

Speaker 3: 16:47

Ginger would.

Speaker 2: 16:48

Hey, we'd love to know if you have a Sphinx cat and if it followed that pattern for life expectancy. They're not very common, so drop us a comment on social media or on GoodPods. That's Pet Science for this week. Hello everybody, here's some ways you can keep the science podcast free. Number one in our show notes sign up to be a member of our Paw Pack Plus community. It's an amazing community of folks who love pets and folks who love science. We have tons of bonus Bunsen and Beaker content there and we have live streams every Sunday with our community. It's tons of fun. Also, think about checking out our merch store. We've got the Bunsen Stuffy, the Beaker Stuffy and now the Ginger Stuffy. That's right, ginger the Science Cat has a little replica. It's adorable. It's so soft, with the giant fluffy tail, safety glasses and a lab coat. And number three if you're listening to the podcast on any place that rates podcasts, give us a great rating and tell your family and friends to listen too. Okay, on with the show.

Speaker 2: 17:52

Back to the interviews. This is the second part of the interview with Stephanie Duesing. Can I ask just two real quick if you're comfortable? Yeah, the first one is obviously he's your son and you've had conversations with him. When he has eye contact, does he see eyes? You know what I mean. If he's face blind, does he recognize what eyes are and that's where you should look? Or is that a deep ingrained evolutionary thing when somebody's talking, my son has something called affective blindsight.

Speaker 4: 18:27

Affective blindsight is the ability to recognize facial expressions even when you can't recognize the faces themselves. And remember how we talked about how different parts of the brain recognize different things. Even though my son can't recognize faces, the part of his brain that recognizes facial expressions is still working, so I think that's a very powerful motivator for an infant or a child to try to look at a face, because my son has always been extremely responsive to other people's emotions and facial expressions.

Speaker 2: 19:02

He sees the widening of the eyes. He sees the smile.

Speaker 4: 19:08

I don't even know that it's not conscious. I don't think for him because he cannot see the entire face. One of the common symptoms of CVI is called simultanagnosia and for what that means for my son's vision is easier for me to tell you what he can't see before I tell you what he can see and I know you want to talk about the paper a little bit.

Speaker 2: 19:27

Can I ask one more question? Then we'll get to the paper. And then you mentioned driver's training is can your son not drive a car because of his condition he can never drive. He is almost entirely blind.

Speaker 4: 19:39

He is almost completely blind.

Speaker 4: 19:41

And I'll explain how that's possible, because I know everybody listening right now is going how could he be almost completely blind and you can't tell? One of the reasons that he passed for typically sighted and again I'm going to emphasize this people who have CVI, even very severe CVI. It can be an entirely invisible disability. Think about Dr Oliver Sachs, who had prosopagnosia and topographical agnosia and was well known for his inability to find his way home. He couldn't see his environment and yet he didn't look like. He was blind and yet he still would have benefited from blind skills like orientation and mobility training so that he could learn how to navigate home. Since he couldn't do it visually is because he is the only person in the world known to process his vision verbally, which means that he sees with words, just like a bat sees with sound.

Speaker 4: 20:41

Earlier in this talk I talked about Daniel Kish, who lost both eyes to cancer and taught himself how to echolocate. Like Daniel Kish, my son has unique visual processing my son. He uses an enormous memorized verbal taxonomy of descriptors to identify every single thing and object and person and animal that he encounters in daily life. And he is so incredibly good at doing this that he appears to be typically sighted this that he appears to be typically cited. My son is actually the most studied individual in the world with CVI. In 2018, he spent six hours in the fMRI for the Laboratory for Visual Neuroplasticity at the Shepens Eye Research Institute. Dr Latfi Marabet, who is the Associate Scientist at Massachusetts Eye and Ear, an associate professor of ophthalmology at Harvard Medical School and the director of the Laboratory for Visual Neuroplasticity, captured my son's use of verbal mediation to process his vision in the fMRI and published a paper on it. So my son this is a true story. My son literally does see with words.

Speaker 2: 21:54

I read the paper.

Speaker 4: 21:56

Yes, and I can put that in the link. Give it to you so you can put it in the show notes. I'll put lots of resources for families in the show notes. So what that means is my son he has. I'll tell you what he can't see and then I'll tell you what he can.

Speaker 4: 22:13

So my son has face blindness or prosopagnosia, so he has no ability to recognize his faces. He has topographical agnosia, so he has no ability to recognize his surroundings. He has object agnosia, so he has no ability to recognize objects. He can't recognize biological forms. So not only can he not recognize his face, he can't recognize his hands, face or body or anybody else's. The only things that my son can see, like a typically sighted person can, are words, letters, numbers and simple shapes, because the parts of his brain that are involved in recognizing words, letters, numbers and simple shapes are still intact. He also has really good color vision and motion perception. I should add that in too, he has something called simultanagnosia, and so for him his visual fields are full.

Speaker 4: 23:10

But if you could imagine being out in the middle of the ocean and a very thick, dense, colorful fog where you could see nothing but a blur of foggy blobs of shapes, unrecognizable colorful shapes and things that blew past you. But you had no idea what anything was. And every once in a while, words floated past. It might say Walmart or McDonald's, and you wouldn't see the sign or the building, you would just see the word floating by, unattached to any recognizable object. You wouldn't see the building or the street in front of it or the parking lot, just the word. And my son? In that tiny, huge blur of color and motion, in the center of his visual field he has a tiny patch of acuity where, through that tiny patch of acuity, that's all he can see of the words and the letters and the simple shapes. And so, for example, if you were looking at a book with 10 point font printing in it, my son can usually see two or three letters at a time. If it's in 10 point font, that's how much acuity he has. The rest of his visual field is just this fog of blur and nothing. Ever he can see motion and color and swirls of blobs and that's it.

Speaker 4: 24:37

And so in order to guess what a person or an object is, my son has to think the verbal characteristics that he's memorized.

Speaker 4: 24:46

I used to wear glasses all the time before I had cataract surgery, so my verbal characteristics used to be tall blonde glasses, and when my son thinks those words to himself, he literally gets a flash of vision of what I look like. It's a momentary flash and then it's gone. There's no retention and visual memory. So, for example, if I say the mona lisa, most typically sighted people get a flash right away of what that looks like, right, but my son can't do that. A flash right away of what that looks like, right, but my son can't do that. So the reason I'm sharing this is because my son he is the most studied individual in the world with CVI and they have now Dr Maribet at the Laboratory for Visual Neuroplasticity has changed the entire direction of the research there and they are now tracking the verbal IQ scores of everyone who comes through the research study. So they've changed the entire direction of the research based on what they learned from my son.

Speaker 2: 25:51

Wow.

Speaker 4: 25:54

And I'm here today because when we discovered what was wrong with my son at the age of 15, and it felt like our world blew up because we didn't know my son was almost entirely blind until he was 15 years old. We had $150,000 in medical bills trying to get a diagnosis for what turned out to be a common visual impairment. I'm here today Thank you so much, Jason, because I know you asked for me to talk about what are some things you would like teachers and the public to know.

Speaker 2: 26:27

Yeah, exactly Because. Yeah, like I am like Stephanie, I'm just in rapt attention of this story and I'm just like trying to process like how would you recognize this If you had a kid? How could you help them? You know what I mean. Like I'm sure people listening are there the wheels, then the gears are just going right now for everybody listening to this.

Speaker 4: 26:49

Thank you.

Speaker 2: 26:50

Yeah, and yeah like I know it's an impossible task, but what are some things that the public could do, or teachers, or whoever, parents even right?

Speaker 4: 26:59

The first thing I want to say is that people need to know about this, not because our story is unusual or strange. It's actually really common. Cvi was identified as the number one cause of visual impairment in the developed world more than 10 years ago and it still doesn't have a diagnostic code. I was in Bethesda, maryland, in November last year at the National Institutes of Health. They had a trans NIH CVI workshop that involved all the major relevant parts of the NIH. There were 50 of us there present I was one of two parent advocates and the rest of the best vision and brain specialists in the world and there were 400 people watching because we desperately need a diagnostic code.

Speaker 4: 27:44

There is current research coming out of the UK right now showing that one in 30 students in a regular education classroom have symptoms of CVI. According to the Perkins School for the Blind, the research is showing that less than 20% of people who have CVI are currently diagnosed. We have tens of thousands of people right here in the US who are undiagnosed, just like my son was. It is common for people who have CVI to go for years or decades undiagnosed, just like my son was. It is common for people who have CVI to go for years or decades undiagnosed, just like my son was. And the reality was. Once I understood what the common symptoms of my son's common disability were, I was able to quickly and easily assess my son's condition in under a minute in my kitchen, using a book and a pencil, my son could have been easily and quickly evaluated for CVI as a three-year-old if anybody had known how to do it.

Speaker 4: 28:47

It is outrageous. It is absolutely outrageous. We saw optometrists, ophthalmologists. We saw optometrists, ophthalmologists, neuro-optometrists, neuro-ophthalmologists, neurologists, neuropsychologists, and we traveled across the country looking for anyone who could correctly diagnose my son and prescribe him a couple of weeks of orientation and mobility training so that my son could learn how to navigate using technology. My son requires the use of Google Maps on his phone in order to navigate unfamiliar areas and we had $150,000 in medical bills and we were repeatedly, verbally and emotionally abused. I was physically threatened by a neuro-ophthalmologist I had never even met. It is routine for people who have CVI to be misdiagnosed with autism, intellectual disabilities, emotional and behavioral disorders. It is horrible what happens?

Speaker 2: 29:48

I'm so sorry, I'm so sorry.

Speaker 4: 29:51

I know many people in the CVI world, many of whom didn't get diagnosed until their late teens or adulthood. Some of them still can't get diagnosed. It is horrible, and I'm in Illinois right now. I'm going to put a link to the Perkins School for the Blind prevalence data on this so that you can take a look. They have some fascinating maps. Look, they have some fascinating maps. And one of the reasons that we can't get diagnosed is because there's literally not a single provider in Illinois who's qualified to diagnose CVI. And these are people who are self-identified and I would love for your readers to take a look.

Speaker 4: 30:27

And so I'm going to give you links to the Perkins School for the Blind because they have a lot of wonderful information about CVI, its prevalence, things you can do for families who suspect maybe your child might be misdiagnosed. And absolutely your child can have autism and they can have CVI. You can have both. But the reality is a lot of people who have been diagnosed with autism are misdiagnosed and they may just have CVI. And one other reason that I'm here today is to talk about CVI's cousin, the auditory cousin, which is called central auditory processing disorder.

Speaker 4: 31:07

Just like CVI is a problem with the vision that's caused by the brain, central auditory processing disorder is a problem with hearing that is caused by the brain, central auditory processing disorder is a problem with hearing that is caused by brain damage.

Speaker 4: 31:19

People who have CAPD often have difficulty. They can hear the sounds but they have difficulty translating the sounds into recognizable language and understandable language. Just like my son can see light but he cannot translate the light into recognizable images, it is believed that many people who have CVI also have CAPD and that makes those people dual sensory loss and on the deafblind spectrum. It is my opinion that one of the greatest tragedies of our time is the failure of our medical and educational establishments to recognize deafblindness as a spectrum disorder. My son is unable to see as well as he's able to, which is practically not at all, and to hear as well as he's able to, because he has both CVI and CAPD. So not only is he almost completely blind, he is actually on the deaf-blind spectrum and this is very common for people who have CVI to have both problems.

Speaker 2: 32:31

And all of this information is so important, right? If that's your message today and people have never heard about it, I think that's like a huge win for this cause just letting people know about it.

Speaker 4: 32:49

According to the research they've been doing, less than 20% of people who have CVI are currently diagnosed. 80% of people who have it right now are walking around and not knowing that they may be severely visually impaired or even almost completely blind, like my son is, and not even knowing it.

Speaker 2: 33:08

Stephanie, oh sorry, Go ahead Sorry.

Speaker 4: 33:18

I just was saying it's tragic. Every single person, my son included, suffered severe trauma from being blind in a world where nobody recognizes that you're blind and nobody does anything to help you. Oh, it's heartbreaking the stories. It's just heartbreaking. And my son will tell you he always knew that he was much more freaked out about going places than everyone around him was, and he had no idea why.

Speaker 2: 33:39

Yeah.

Speaker 4: 33:40

And I dropped my blind child off at preschool every day and then kindergarten every day, and no one around him knew that he couldn't recognize his teachers.

Speaker 2: 33:50

Yeah.

Speaker 1: 33:51

So scary.

Speaker 4: 33:52

It's terrible, imagine, imagine being blind.

Speaker 2: 33:56

It's like trying to imagine something you can't even imagine. It's just wild.

Speaker 4: 34:00

I think people can imagine what it's like to be blind. In fact, there's actual research showing that typically sighted parents would rather have their child have an uncurable form of cancer than be blind. They are so terrified of being blind. So I think people can imagine how terrifying it is to be blind and then, on top of that, to have absolutely nobody around you know that and do absolutely nothing to help you. It's a tragedy.

Speaker 2: 34:29

Stephanie, is your son doing okay? Now Is he doing fine?

Speaker 4: 34:33

We had quite a battle and thank goodness Thank you for asking that he is excelling.

Speaker 2: 34:38

Oh yay.

Speaker 4: 34:40

Hot hard. And I want to put a little shout out here to Lucas Frank. Lucas Frank is the senior consultant at the Seeing Eye, which is the guide dog place in New Jersey. I don't know if you've ever heard of the Seeing Eye.

Speaker 2: 34:54

I have yes.

Speaker 4: 34:55

Lucas Frank is the only reason that we got help getting my son a diagnosis. Frank is the only reason that we got help getting my son a diagnosis, and my book, which is called Eyeless Mind a memoir about seeing and being seen, which is the true story of how a music teacher made a major medical discovery in the field of visual neuroplasticity my book is dedicated to Lucas Frank. He is the only person, the only reason we got help. The only reason my son needed a diagnosis was not because he needed help at school. He didn't need academic help. The only thing he needed help with was navigating, because he intended to go off to Chicago and study art at the School of the Art Institute in Chicago.

Speaker 2: 35:34

How daunting, oh my God.

Speaker 4: 35:36

Yeah, blind and navigating the streets of Chicago blind, and I was like he cannot do that without professional instruction and how to navigate, because he was counting his steps and turns and learning his pathways by following his family and friends around and I'm like that's not safe.

Speaker 4: 35:52

You have to have actual blind skills to do this way that you can access orientation and mobility training with the white cane is with a doctor's diagnosis, and so that's why we fought so hard to get a doctor's diagnosis, and I had to take my son to Paris for a week-long research study where Dr Sylvie Chocron, who is the director of the unit of vision and cognition at La Fondation Rothschild in Paris, france, she did a week-long research study just on Sebastian.

Speaker 4: 36:27

And the reason that was important is because one of the reasons that we had difficulty getting my son a diagnosis is because he has a normal appearing MRI. When you take an MRI picture of my son's brain, it appears to be healthy, because an MRI only looks at the structure of the brain. It does not look at the function of the brain, and so we have known more than 10% of people who have cerebral palsy have a normal appearing MRI and yet they still have cerebral palsy. Doctors have known this for a long time, and CVI is the same. You cannot tell what a brain is doing just by looking at the structure. So when we went to Paris, dr Chakran did something called a SPECT scan on my son. A SPECT scan is a nuclear medicine test and it measures the blood flow to the brain.

Speaker 4: 37:15

Many areas of the brain that are not receiving blood flow are dead tissue. Areas of the brain that are not receiving blood flow are dead tissue. And so we found out my son has significant brain damage due to the fact that I almost died giving birth to him, and so that's what it was. And yeah, and once we had proof of that brain damage, then we were finally able to get people to listen to us here in the United States and to get a diagnosis, and so, to answer your question, we were able to get two things for my son. My son received intensive occupational therapy for navigation through a wonderful occupational therapy center here in Chicago, and we went three days a week into the city of Chicago where his occupational therapist worked with him on learning how the city of Chicago is organized, how does the address system work, and then, how does the public transportation system work?

Speaker 4: 38:11

My son can never, ever drive. Son is the only person in the world known to see with words. My son is actually also the only person in the world known to be able to choose to see or not see with his eyes wide open, and so my son cannot see anything unless he is actively trying to figure what things are out, are around him, by using those verbal characteristics like tall blonde glasses. If he's not actively trying to figure things out, then he has no conscious perception of sight at all, and they proved that in the fMRI. And so my son actually spends most of his waking hours with his vision off, and when he's sitting here listening to a conversation, his vision is completely off and he has no conscious perception of sight and he's just focused on listening. He can never drive Gotcha.

Speaker 4: 39:05

He can never drive, and so his occupational therapist was wonderful, taught him all about how to use the subway, how to use the city buses, how to Uber. And then I have to give a shout out to Leader Dogs for the Blind. They flew him out, all expenses paid for a week-long intensive boot camp with a white cane instructor and orientation and mobility specialist, and they worked with him with a blindfold to make sure. One of the common symptoms of CVI that happens a lot and that's very misunderstood is something called visual tiring. It is very common for people who have CVI to lose all conscious perception of sight randomly and uncontrollably. When they are tired, overwhelmed, overheated, exhausted or sick, they go completely blind and have no control over it. This is just a function of blood pressure. I don't know if you have ever fainted, but I fainted once oh, I've got, I've had vasovagosyncope runs in my family.

Speaker 2: 40:08

Oh, I had that too. Yeah, it runs in my family.

Speaker 4: 40:11

Yeah, I had that too, and so what happens is your vision blacks out and it starts at the edges. Yeah, then you keel over, but your vision blacks out first, before you learn, lose the consciousness yeah people have. Who have cvi have less visual processing power to start with, and so their vision is far more sensitive to fluctuations in blood pressure than typically people are and they have that experience of blacking the vision, blacking out, even though they're not losing consciousness.

Speaker 4: 40:42

And this is a very common, very well-documented symptom, and so we discovered this. We had months of discoveries about how my son's vision was different from typical Once we figured out he was face blind. It just felt like every day, it was like more and more, oh my gosh, it just kept getting like more and more serious and concerning right. And then we walked. We happened to be walking downtown Chicago for three miles on a 95 degree day, and my son became unable to read his phone, and that was his only way of navigating was by looking at google maps. So then I was like he needs to have white cane training, because if he's ever trapped out on a 95 degree day, he may go entirely uncontrollably blind, like he just did right in front of me. And so Leader Dogs for the Blind was absolutely wonderful, and so, to answer your question about how my son is doing, he's wonderful.

Speaker 4: 41:36

He's doing great. He's living independently, he has his own apartment, he's finishing up his senior year of college and looking forward to his first job, which will be starting full time this summer, and he's working at his dream internship right now and they've hired him to start full time when he graduates. So thank you for asking.

Speaker 2: 41:55

Decent. I love it. Huge relief, I love it. That was a very long answer to how is he doing.

Speaker 4: 42:00

I love it. Huge relief, I love it. That was a very long answer to how is he doing.

Speaker 2: 42:03

No, it's so good I won't put this in, but I'm going to finish off the questions, but this interview with longer ones, I can just split them into two parts and have one part on one episode and then finish on the second episode.

Speaker 4: 42:14

You are so kind, thank you.

Speaker 2: 42:17

We're good. Can I move on to our last couple of questions?

Speaker 4: 42:21

Yes.

Speaker 2: 42:22

Okay, perfect, um, but let's see what, stephanie, thank you so much for talking about CVI and the really personal story with your son. I'm blown away. I'm so fascinated. And top it all off with the good news that your son is doing well, just, it just hits me right in the heart. Thank you so much for sharing with us today. We do have a couple standard questions on the show. I was wondering if you'd be able to answer them. Yeah, yeah, the first one. We always ask our guests to share a pet story. We mix science and pets on our show and I was wondering if you could share a pet story with us.

Speaker 4: 43:01

I would be happy to share a pet story with you. So one of my things is that I absolutely love animals. I always have, and when my son was little, we got him a guinea pig.

Speaker 4: 43:15

And actually we got him two guinea pigs, because they're social animals and they shouldn't be alone. Yes, and as he got a little older, one of the guinea pigs passed away and the other one was lonely, and I knew. If I asked my husband, can we bring another guinea pig home? His answer was always no. So in my probably not the best mode I don't know what happened we ended up at a pet store, the two of us, my son and I, and we just brought home a couple more guinea pigs.

Speaker 2: 43:46

Okay, ask for forgiveness or permission.

Speaker 4: 43:49

No, exactly, yeah, and so we had a little setup in the family room with so they could run around, not just a cage, we had a huge big cage system and everything for all the piggies. But we also we enjoyed having them in the family room because they were so entertaining, so we had a special play area for them with the gate all around it and it was huge and they could have toys in there and hay and all their food and everything and just be right where we could enjoy them.

Speaker 4: 44:16

so we just introduced all the guinea pigs and just set them loose in their little pen in the middle of the family room, and we didn't say anything to my husband for quite a long time. I think, several weeks went by and then finally, about three weeks in, my husband goes. I think there's three guinea pigs in there.

Speaker 2: 44:35

You should have just gaslit him and said there's always been three.

Speaker 4: 44:40

That's a great answer. I should have done that.

Speaker 2: 44:44

Like what are you talking about? We had three. We always have had three.

Speaker 4: 44:48

Always. I love that. Yes, if I had been thinking I would have done that. It was just funny, because one of them was white and one of them was like tricolor brown and black and white, and the other one was, I think, solid brown, so they didn't look anything like each other. So for three weeks we had three completely different guinea pigs running around in there.

Speaker 2: 45:06

Well, that's your husband's fault. That's not your fault. That's your husband's fault. That's not your fault.

Speaker 4: 45:11

No, it was not very observant. Yeah, so yeah, I confess I wasn't very good about stuff like that. So that's my story.

Speaker 2: 45:23

Moral is, you should probably ask your husband before you bring animals into the house. I'm trying to get a third dog and I might just bring it home one of these days. We'll see if my wife notices. Probably.

Speaker 4: 45:29

Do as I do and not as I say. How about that?

Speaker 2: 45:33

Thanks, Stephanie. That's great, and the last one's kind of I don't know if our minds can be blown anymore, but we have. But we challenge our guests to share a super fact. The super fact is something that you tell people and it blows their mind. I'm going to have to go sit down and think about this interview after. Do you have a super fact in the tank for us?

Speaker 4: 45:54

I've already said it, but I'm going to say it again because it's so important Even severe CVI can be an entirely invisible disability. There is no way to tell that my son is on the deaf blind spectrum and is almost completely blind academically, socially, physically or, I don't know, artistically.

Speaker 1: 46:15

There's no way to tell.

Speaker 4: 46:16

If you met my son on the street, you would not know he had any disability of any kind, and yet he is almost completely blind and he's also got central auditory processing disorder and cannot see and hear well at the same time. Yeah, and I'll give you another one, which I've already mentioned as well. Research is showing that one in 30 students in a regular education classroom have symptoms of CVI, which makes CVI more prevalent than autism.

Speaker 4: 46:45

And this is a huge public health crisis, and so I have an ask for everyone listening. I have a call to action for you today Please share I'm going to put a whole bunch of resources in the show notes for Jason to share and my call to action to everybody listening if you've never heard of CVI, or even if you have, you need to share this information, because what happened to my son should never happen to another human being. My son suffered severe trauma from being blind in a world where nobody recognized it. Every single person that I know who has CVI had the same trauma, and I know a lot of people because of my advocacy work.

Speaker 2: 47:34

That is a great call to action. We are going to. We'll take you up on that offer, stephanie. Thank you, yeah, we are going to. We'll take you up on that offer, stephanie. Thank you. Yeah, what a powerful discussion. Oh, it just hits me right in the heart. But that's what our show is about. Right, we talk about science and we personalize it. Cvi isn't just a condition. It's a condition that people have and those people are cared about by others. Right, we can be empathetic and think about others and share that information.

Speaker 4: 48:11

And as a teacher I look back on students that I had been told had autism and I realize now they might have had autism but I know for a fact they also had. Cbi and I didn't know that at the time. But I can look back at things and go oh, how much.

Speaker 2: 48:20

We missed much opportunity Right, Real quick. Well, one of those do those resources have? What's the best way to ask this Will those resources have a way to test, Like you said? You had that one minute test. Is that a thing anybody can do? Is that in the resources, or do you have to take more training for that?

Speaker 4: 48:41

So the Perkins School for the Blind in Boston has what they call the CVI protocol.

Speaker 4: 48:47

I'm proud to say that the research paper on Sebastian is one piece of many pieces of research they are using to support this assessment tool and that is going. I believe it is still in in development, but very soon it will be free and open to the public to use. It's intended for teachers of the visually impaired, occupational therapists, doctors, so you can go to the perkins school for the blind website and look up the cvi protocol, because that's an assessment tool that's in development right now. There's also Dr Nicola McDowell who is out of I think she's in New Zealand. Dr McDowell has CVI herself. She had a stroke when she was in high school and developed CVI as a result, and she has a new app out. It's called the Austin Assessment App.

Speaker 4: 49:39

And I think you can find information about that. It's just an app you can have on your phone that can help you to look at your eye tracking, and there's different versions available, for I think there's a version available for teachers of the visually impaired and I think there's a version for parents I'm not sure so you can look up. Some of the best places for factual information about CVI is cviscotlandorg.

Speaker 4: 50:04

Cviscotlandorg is considered by experts to be one of the best sources of factual information about CVI. It is comprehensive. It is extremely accessible to the layman, so you don't have to be a neuroscientist to understand it. Accessible to the layman, so you don't have to be a neuroscientist to understand it. They have many different videos about what looking through the brain of a person with CVI can be like. Every single person who has CVI is different, and so there are many different videos demonstrating different common symptoms of CVI. You can't just watch one and think, oh okay, I know what CVI is because every person experiences it differently, depending on where their brain damage is, but they have many different, very helpful videos that you can look at there and tons of just great information about the science behind cvi.

Speaker 4: 50:54

Another great resource is for parents. This is a great reference book. It's 600 pages of research. It's called Vision and the Brain Understanding Cerebral Visual Impairment in Children by Dutton and Lewick. I'll put that in the show notes too.

Speaker 2: 51:13

That's awesome.

Speaker 4: 51:15

You should have that on your bookshelf if you're a teacher of the visually impaired or if you are an occupational therapist or a parent of a child with special needs that you suspect might have, cvi awesome.

Speaker 2: 51:27

Yeah, and we will put as many of those resource links in our show notes, thank you. Thank you for providing them too. I love that. I really appreciate that. Stephanie, we're at the end of our chat and I just want to thank you so much for this really powerful discussion.

Speaker 4: 51:42

Thank you for having me today. I am so grateful for this opportunity. It means so much to be able to talk to someone and have the opportunity to help raise awareness about this, because there are so many people who are suffering unnecessarily and that really shouldn't be like this, and that's why I do this job, and that's why I do this job and that's why I'm here today. I so appreciate you having me. Thanks.

Speaker 5: 52:05

Jason. Okay, and it's time for story time with me. Adam, if you don't know what story time is, story time is when we talk about stories that have happened within the past one or two weeks. Dad, do you have a story?

Speaker 2: 52:18

So I think I'll give everybody an update. Last two weeks ago, a week and a half ago, randomly, bunsen, I think on monday or tuesday a couple weeks ago we noticed he had a limp. I don't know if it was in the morning, I think it was when we got home from work. He was limping really badly and that's nothing new for bunsen to have an injury or fake an injury. But after a couple of days it didn't get better and that's when we knew something that was, you know, not so great. So we took him into the vet.

Speaker 2: 52:49

The vets were a little concerned about his limp. He didn't want to put any weight on it and his other leg, his other leg was swollen from the weight, meaning that he was putting all of his weight on his other side, and they were concerned he tore his cruciate. Cruciates in dogs are like a human ACL. I don't want to say it's a common injury, but it's something that they see quite often. And they were like, well, if he's torn his cruciate, I mean the best thing you can do is surgery to repair it, or you can. We should probably wait a little bit to see if it's partially torn, because partially torn cruciates don't require surgery.

Speaker 2: 53:35

So we weren't really ready to jump right into surgery on Bunsen. So we got he got some pain meds and about three days went by and his I think his limp slowly faded and he's been on rest that's what they suggested like rest him for two weeks, meaning no walks and just he's kind of trapped in the house. I think he's getting a little stir crazy, um, but the last couple of days we've been watching him carefully and there's been no limp or or the the slightest hint of hint of a stiff knee. And I took him in this morning for a checkup and Adam, it was actually very helpful, he was on deck in case the uh, the appointment was going to take too long Cause I had to get to school, I had to prep in the morning and the doctor, the vet, was like I think it was a partially torn because he's healed or it's healing.

Speaker 2: 54:29

So we are giving him a slightly increased activity over the next month and we're looking at getting him a brace. So it's all very exciting because if you don't have to do surgery, that's a win, not necessarily because surgery is expensive, but because it's invasive and that surgery cuts Bunsen up and he would have a month of recovery. So I'm just glad, like we're just very lucky, that it was looks like a partially torn cruciate and not a full torn one. So the the big guys on rest for a little bit longer, and that's my story.

Speaker 5: 55:03

Okay, I have a story Yesterday. So yesterday I didn't have work, which was good. I had a dentist appointment, so I didn't work and I reconnected with one of my high school friends. His name is Galaxia. He's a funny guy but we hung out for most of the day and I brought him over to Papa's house. Because the dogs are like, they take a little bit to get used to people and Galaxia is not like the biggest fan of dogs. He likes dogs but he doesn't like them that much. Biggest fan of dogs. He likes dogs but he doesn't like them that much. But he likes cats. So I brought him up to Papa's house.

Speaker 5: 55:45

Like, we hung out at Papa's house and all the cats wanted to go on him but he's really ticklish. So when, when the cats would like go on his lap or something, he would kick them off because they were tickling his legs with their little paws and he he's like get off of me. Um, and then he had his hand like over the side of the couch and one of the cats brushed up against his hand and tickled him and he jumped. He jumped in the, he like jumped out of his, jumped out of the the couch because the cat went like brushed on his hand. Um, but yeah, the cats, the cats at the farm, like people, um, as long as you're not threatening, but they're, they're pretty chill, which is really great. Um, but Galaxia was getting tickled by the cats and I think that's funny.

Speaker 5: 56:34

But, yeah, uh, I, I let him see Bunsen and Beaker. Um, let him see bunsen and beaker. Um, but bunsen and beaker are good guard dogs and they take a bit to get used to people. So they were. They were a little barky, a little a little barky, but beaker was smiley and wanted to say hi to galaxia. Um, because she is she's like, less wary of people. If you have food, I think you could like easily, uh, you can easily trick beaker like beaker is pretty easy, our dogs are pretty easily trickable. Like when we were at comic-con, we would trick them pretty easily with, uh, peanut butter, uh, when we were leaving. So then, yeah, it's super sad, but uh like, sorry, a bit of a tangent, but like, yeah, our dogs are trickable and galaxia is ticklish. That's, that's my story. Uh, do you have a story?

Speaker 3: 57:18

I sure do. We got two new trail cams today and we're excited about putting them up because we would like to see more of Norbert in action and he is super elusive and we can't catch him on camera. So we now have more eyes on the creek bed. But it's been raining so we haven't gone down there and, as Jason said that, bunsen's been on rest so tonight we did a little bit of a walk just to build up his strength. I'm really looking forward to going back down there and seeing what Norbert has been up to as well. Jason brought the drone out and was able to do some aerial footage of the changes that have happened in the creek area and that was super cool to see all of the ecosystem engineering that Norbert has been doing, that engineering that Norbert has been doing. Aside from that, the dogs are great. Jason gave you an update on Bunsen. What a good boy. What a good boy at the vet. I guess the vet said that he is ripped Very, very healthy.

Speaker 2: 58:34

Yeah, he did.

Speaker 3: 58:37

And that's awesome because we've been taking very good care of our dogs. Beaker's ripped too. She is like sleek and stealthy, as is Ginger. Ginger is sleek, stealthy and an escape artist. She is ramping that up times 1 million, but other than that, things are great. We're very lucky and fortunate to have the family that we do, and that's my story.

Speaker 5: 59:03

We have a special guest again on the podcast. Not that she's not special anymore, but she's making more appearances. So maybe she's becoming less of a special guest and more of a regular guest, but she's still a very special person. We have Annalise here to tell us a story about what's going on at the farm. Okay, Hello.

Speaker 1: 59:30

So some very exciting stuff has happened at the farm where now we have new baby chicks at the farm, and it's so exciting.

Speaker 2: 59:40

Oh, really, they hatched, annalise.

Speaker 1: 59:42

They hatched and I hear them all night chirping away, but it's okay because they're so cute and I love them. And yeah, some have stripes, some have like little dots on their head of yellow. We have a few yellow chicks hatching as well, which is so cute. We only have one, uh, yellow chicken, but yeah, they're just going away and, um, adam's papa says that we should have a few more tonight and more in the next few days, so it's pretty exciting how many is that?

Speaker 2: 1:00:14

like gourd said, there might be 20 yes, there might be 20.

Speaker 1: 1:00:19

There have been a few that haven't made it all the way through. That's so many new chickens it's crazy and like some have extra toes too, like it's kind of weird, but they're super cute, um, but yeah, unfortunately not all of them have made it, but a lot have made it, and I'm kind of surprised, since this is the first time we've done this. But yeah, they're doing good and that's my story.

Speaker 5: 1:00:45

So many chickens oh, the, the, the chick. Like, we have four cats at the farm, um, so we have them, like, locked in a room and we have a shoelace on the door and a nail in like the door frame, so that the door can't open unless you untie the shoelace. Because the cats are larry, in particular, mostly because I brought him in to look at them because he was curious, as my fault. Um, but they're, they're curious about what's going on in the room and want to eat the chicks. But that's, that's cats. Cats will do what cats do, but uh, yeah, um, yeah, I think that's. I think that's it for story time. Thank you so much for listening to this week's podcast episode and sticking around to my section story time bye, bye.

Speaker 2: 1:01:28

That's it for this week's show. Thanks for coming back week after week to listen to the science podcast. Special thanks to stephanie dusing, whose two-part interview I think really opened her eyes to different types of disabilities that people have in our world. I know I learned a lot. Again, I'd like to thank the Top Dogs that's the top tier of our community, the Paw Pack. Their support and other support that folks have there keeps the Science Podcast free. If you'd like to hear your name, check out the link in the show notes and join up at the pot pack. Okay, chris, let's hear the names.

Speaker 3: 1:02:02

Bianca Hyde, mary Ryder, tracy Domingue, susan Wagner, andrew Lin, helen Chin, Tracy Halberg, amy C, jennifer Smathers, laura Stephenson, holly Burge, brenda Clark, Anne Uchida, peggy McKeel, terry Adam, debbie Anderson, sandy Brimer, tracy Leinbaugh, marianne McNally, fun, lisa, Shelley Smith, julie Smith, diane Allen, brianne Haas, linda Sherry, carol McDonald, catherine Jordan, Courtney Proven, donna Craig, wendy, diane Mason and Luke Liz Button, kathy Zerker and Ben Rathart.

Speaker 2: 1:02:48

For science, empathy and cuteness.