Physical Activity and Its Impact on Visual Phenomena

On this episode of Change Makers learn about the possible relationship between physical activity and sleep levels, and how they impact visual phenomena. After that, learn about APH's Memory Puzzles. 

On this episode (In Order of Appearance)

• Narrator
• Sara Brown, APH Public Relations Manager
• Dr. Peter Allen, Professor of Optometry and Visual Science
• Bobby Fulwiler, APH Product Specialist, Educational Product Innovation 

Additional Links

• Esme’s Umbrella
• Peter Allen email
• Memory Puzzles: Shapes
• Waterjet Works Design

Transcript

Narrator: 0:00

<silence> Welcome to Change Makers , a podcast from a PH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.

Sara Brown: 0:15

Hello and welcome to Change Makers . I'm APH's Public Relations Manager, Sara Brown . And on today's episode, we're gonna learn about the possible relationship between physical activity and sleep levels and how they impact visual phenomena. This is known as Charles Bonnet syndrome. People who are blind or low vision can experience the visual disturbance or hallucination. Very interesting conversation with that. And after that, we are gonna have a check-in with some really cool APH products that are on the way diving back into the Charles Bonnet Syndrome. According to the Library of National Medicine, the syndrome is named after Charles Bonnet . He lived from 1720 to 1792. He was a Swiss naturalist and philosopher, and he contributed to the world of botany and philosophy in 1760. He first described in detailed his grandfather's visual hallucinations, and 177 years later, the syndrome was named after Bonnet in 1937 by George de Mosier. I have Dr. Peter Allen here to talk about this syndrome and a current study that's underway. Hello, Dr. Allen, and welcome to Change Makers.

Dr. Peter Allen: 1:31

Hello. Thank you very much for inviting me.

Sara Brown: 1:33

So my first question I always like to ask is, can you introduce yourself to our listeners and let us know what it is that you do?

Dr. Peter Allen: 1:42

Okay. Well, my name's , uh, professor Peter Allen. I'm based in Anglia Ruskin University in Cambridge, in the UK. Uh, I'm , most of my job role is involved with research , uh, and I'm quite passionate about research into getting people with a vision impairment, physically active , uh, uh, particularly people from ethnic minority groups who tend not to participate in this sort of , uh, activity as much as other groups. Uh, and currently I'm conducting a study looking at physical activity in Charles Bonnet Syndrome. And then you reached out to me and here I am.

Sara Brown: 2:18

That's right. And here you are, and I'm so glad you're here. Can you explain why you think physical activity is important?

Dr. Peter Allen: 2:25

Yes, of course. Physical activity is important for everybody. The World Health Organization have come up with recommendations for how much physical activity anybody should be doing. Uh , and that's the same depending on whether you have vision or you have visual loss. Um , in my experience, people with vision loss , uh, do very little physical activity on the whole. Uh , and we've certainly investigated reasons why that might be the case. Now, if you do do physical activity, obviously you're physically healthier, it reduces the chances of systemic diseases, you know, it's better for your overall general health. Uh , and recent research has shown it's better also for your eye health. Above and beyond that , it's without a doubt good because you're normally doing the physical activity with somebody. So there's a social aspect , uh, and physical activity has been proven to be very good for mental and social health as well.

Sara Brown: 3:20

So the physical activity actually is better for eye health?

Dr. Peter Allen: 3:25

Yep . Yes, indeed. It's been shown to , uh, pre prevent progression in diseases such as glaucoma. Now , I wouldn't stop taking the other treatments for glaucoma , uh, but if you do physical activity on top of these other things, it's been shown to have, have a benefit.

Sara Brown: 3:44

Wow. That is new to me. I did not know that. Now, can you talk about Charles, is it Charles Bonnet syndrome?

Dr. Peter Allen: 3:51

Bonnet , Charles Bonnet syndrome? Yes. It's, it's a very unusual condition. So it's where people with sight-loss see things that are not real. Uh, hallucinations are probably more appropriately visual phenomena. Uh, it's not caused by a mental health problem or dementia. These people are, are, have , have no mental health issues. Uh, and the people are normally very aware that the things that they are seeing these hallucinations are visual phenomenon are not real predominantly because their vision is poor. And so they're used to things being pretty blurry. Uh, and these visual phenomena are actually quite sharp and clear. Uh , they can be recurring, they can see different images at the same time, they can see different images, sorry, each time the images can occur frequently or just occasionally. Uh, and, and that can be really quite, have a quite a severe impact on the person's mental health. Uh, yeah, they , they're , they people, people who have Charles Bonnet Syndrome tend to struggle with the , their mental health associated with getting these visual phenomena.

Sara Brown: 4:54

Okay. So does Charles Bonnet Syndrome impact individuals who are blind or low visioned, or is it, or is it found in individuals who have been blind since birth?

Dr. Peter Allen: 5:06

Both , uh, both. In fact, the onset of the hallucinations can vary. It tends to be, if you've got a slowly progressing , um, sight loss, it tends to maybe be a year after it , after your vision's fairly poor. Whereas if for whatever reason you have sudden vision loss, the , these hallucinations or visual phenomenon can start relatively quickly after the , uh, the reason for the sight loss. So you have to have sight loss. You don't get it if you , if you've got normal vision. But once you've got , um, sight loss, it doesn't matter whether you've had it for a long time or it's fairly new. You , you have got the possibility of having this Charles Bonnet syndrome.

Sara Brown: 5:46

But if you were born blind, no?

Dr. Peter Allen: 5:52

No. Yes, you , you might still get the , uh, Charles Bonnet syndrome. Basically, it's associated with sight loss irrespective of when or how you've got , you've got , got that sight loss.

Sara Brown: 6:03

Okay. So if you were born blind, what, what, what would an individual hallucinate?

Dr. Peter Allen: 6:10

It depends. Sometimes it's patterns such as shapes or lines. Sometimes it's people, animals, objects or places they can be moving. They can be still, they can be black and white or they can be color. Uh, they can last sub happen suddenly and be over with, or they can last up to several hours. Obviously with people who are blind, they've got no appreciation of, of what these things would be, so they would be more likely to be shapes. Uh , whereas if people who have had , um, visions, you know, have had vision at some part of their life, then it's normally , uh, it can be again, anything from a shape or a person or a thing. Um, it and , and it can be quite vivid and quite clear.

Sara Brown: 6:51

Wow, that's really interesting to hear. Now, how is Charles Bonnet syndrome diagnosed?

Dr. Peter Allen: 6:59

Yeah, there's no specific test for Charles Bonnet syndrome. Um, it's the people, it's important to note that the people who get these visual phenomena are , are hallucinations. Know they're not real. 'cause they , they, they can't smell it. They can't touch it. Uh, and so it's, it's, they're aware that what they're saying isn't there. Um, which is , so it's quite an , it's quite a specific symptom. Uh, and it's diagnosed mainly through a detailed medical history and ruling out other possible causes such as dementia or , or some other , um, mental health conditions.

Sara Brown: 7:34

Does this occur more in individuals who might be just tired?

Dr. Peter Allen: 7:39

Um, tiredness does make it worse. Um, but it's new . It's, some recent studies have shown that up to 30% of people with sight loss can get some of these visual phenomena. So it's reasonably prevalent in people with sight loss, much more so than I realized before I started to look into it.

Sara Brown: 7:59

Now how is this treated or is there a treatment?

Dr. Peter Allen: 8:02

That's the thing. There, there isn't any current cure for Charles Bonnet Syndrome, and there's been several meds, medications out there have been trialed, but nothing that's really been shown to be super effective. Um, I , I mean, the one thing is , um, lack of sleep and anxiety tends to make the hallucinations a little bit worse as do certain other types of medication. But there's nothing that's been shown to really be particularly effective , uh, form of treatment for this.

Sara Brown: 8:37

Now I understand there is a study underway right now. Do you care to share what's going on with it? And is there anything listeners out there can do ?

Dr. Peter Allen: 8:45

Yes, we've got, we're very interested in looking and investigating whether , um, physical exercise because it's been shown to be beneficial in so many different other ways. How can reduce, if you do more physical exercise, does it reduce the number of visual phenomenon or hallucinations that occur and linking that with sleep? So we're looking at independently does physical exercise help? We're looking, does sleep help? But also we're very aware that if you do physical exercise, you , you might sleep a little bit better and that might help , um, generally with the idea, if, if , if we can show some sort of association , uh, so people who do more exercise, get less hallucinations, then we'll go on to the next stage, which is where we come up with an intervention , uh, which is where we all have half a group doing some physical activity to begin with and half not . Uh, and seeing whether we can reduce the hallucinations through something as simple as physical exercise.

Sara Brown: 9:44

Does this have anything to do or are there any links between REM sleep and this? Just curious.

Dr. Peter Allen: 9:53

Well , yeah, that's one . Funny enough, that's one of the things we're looking into. I mean, there mightn't be anything to do with sleep whatsoever, but there are two of the things that we've got a a reasonably we're reasonably hopeful might be , uh, but we , uh, it's not just quantity of sleep. We're looking at quality of sleep and, and several different other factors to do with sleep to see whether there's an association there.

Sara Brown: 10:15

If a person's experiencing the Charles Bonnet Syndrome, they're, they're aw , they're awake and they know they're doing it knowing they're having a hallucination, what would, what would you want that person to do? Just go somewhere and sit down until it subsides?

Dr. Peter Allen: 10:33

Yeah, I mean it , that's a extremely good question and , and a very difficult one to answer. Uh uh, yeah. Um , yeah, basically, yes, at this stage , uh, I mean, it's quite off-putting and upsetting for a lot of people who, who get these hallucinations. So we are just really working hard to try to get , uh, something that we'll be able to treat , uh, treat it and either prevent them occurring in the first place or something that we can help with if the person's actually having the hallucinations at the time, sadly, there's nothing particularly useful at the minute to, to treat it.

Sara Brown: 11:08

So it's looking like physical activity helps keep these hallucinations at bay in high quality sleep with REM.

Dr. Peter Allen: 11:17

Yeah. That , that's what we're investigating. Mm-hmm <affirmative> . Uh , um, we, we don't know. We think they might. Uh, and so the first thing to do is to ask people, you know, retrospectively, whether when they do more exercise, whether they're sleep reduces, and if we are finding something that's suggestive that it is, that then we'll investigate it more proactively.

Sara Brown: 11:39

Now for individuals who are blind or low vision, what do you think is the reason why their physical activity is so low? Is do you think , are I , I don't know, are they, do you think that they might be just a bit nervous to go on a walk by themselves? I don't know. What , what are you , what are the, are there any answers to that?

Dr. Peter Allen: 12:01

Yeah, that's another good question. I had a fantastically good PhD student , uh, called Rosie Lindsay. Uh , so now Dr. Lindsay, who looked into just that. Uh, and there's a real array of different reasons. Cost , um, it , it is a big one. Public transport to physical exercise gyms not being, being particularly , uh, uh, friendly to people with vi both from the staff not being trained and the equipment not being , um, suitable for somebody with low vision. Um, there's, you know, there's some, within certain ethnic minority groups, there's a certain stigma , uh, for , with being , uh, visually impaired. There's just so many different reasons , uh, that they came up with her , her PhD, the whole idea of it was initially to look into interventions. In the end, there was just so much going on there, reasons why , um, people with , uh, sight loss weren't doing any physical activity that we really did , uh, have a deep dive into it to, to find out. There's plenty more reasons as well. It's really , uh, quite sad when we were doing this study that there were some very simple things that could be overcome, which is what we're consequently trying to do. We're trying to set up systems that are going to be long term , that are gonna be self-sustaining and that are gonna be run by people with sight loss for people with sight loss, getting them active.

Sara Brown: 13:22

And is there, if anyone is out there listening and wants additional information , um, about this syndrome or about the study, is is there a place where they can go?

Dr. Peter Allen: 13:31

Sure, of course. In the, in the UK there's a , um, organization called Esme's Umbrella, so it's ESME apostrophe S, and then New Word U-M-B-R-E-L-L-A. Uh , and they're specifically set up for , um, Charles Bonnet syndrome. And , uh, the lady Judith Potts runs that . She's just fantastic and with the study and we'll work , we're very keen to look at , um, people from the U. S. to see whether if they can participate within the first study and then consequently in any other studies, if we go further and if they drop me an email at Peter P-E-T-E-R , full stop , Alan , a LLE n@aru.ac.uk , then , then I can certainly, certainly , um, send them some information and they can decide whether they want to , um, fill in the survey, which is the first step of what we're doing, and that would be super helpful if they would.

Sara Brown: 14:30

Alright , Dr. Allen, is there anything else you would like to share on this podcast?

Dr. Peter Allen: 14:35

No, otherwise, if anybody's got any questions about any of this stuff , uh, or wants to get involved with any studies, just to drop me a line with the email that I've already given.

Sara Brown: 14:44

And I will be sure to put that link to your email address in the show notes for anybody out there looking to email Dr. Allen. Dr. Allen, thank you so much for coming on Change Makers and talking to me today.

Dr. Peter Allen: 14:55

That's my pleasure, indeed. Thank you very much.

Sara Brown: 14:58

And according to Esme's Umbrella, the websight Dr. Allen mentioned, everyone's experience with Charles Bonnet Syndrome is different. The hallucinations may grow less frequent in time, or they may remain for many years, and not everyone who is blind or low vision will develop Charles Bonnet Syndrome, but for those who do, the condition can be distressing and debilitating, not least because it may be misdiagnosed as a mental health condition. I've put links to Esme's Umbrella and Dr. Allen's email address for anyone interested in additional information or signing up for that study. Now we're going to shift gears and learn about Memory Puzzles, Shapes. There are some exciting things happening with that product. And to tell us more, I have APH's Product Manager, Bobby Fulwiler. Hello B obby and welcome to Change Makers.

Bobby Fulwiler: 15:52

Thank you. Thank you for having me. I'm excited about this.

Sara Brown: 15:55

Okay, so the first thing I always like to ask is, can you introduce yourself and let our listeners know what it is that you do at APH?

Bobby Fulwiler: 16:04

Absolutely. My name is Bobby Fulwiler and I am a product manager for the American Printing House for the Blind. Um, I'm getting ready to celebrate six years with APH. Uh, my first introduction with APH was through braille, which I am a UEB certified in Braille. Uh, I'm on the braille tactile literacy team. And , um, I predominantly work with braille , um, materials for students , uh, uh, elementary school age. However , um, I also like working with young , young adults and transition age. Um, I recently came out with a line of puzzles that I'm here to talk to you today and , um, some future iterations of that same puzzle that I'm excited to talk about that's upcoming.

Sara Brown: 16:53

Great. Well, you're here to talk about Memory Puzzles. Can you talk about what they are?

Bobby Fulwiler: 17:00

Absolutely. So Memory Puzzles , uh, is gonna be a line of , uh, puzzles that APH comes out with. This is the first line, first generation , if you will. Uh , they're called memory puzzle shapes, and we have 52 durable waterproof puzzle pieces , uh, each representing one of 26 matching sets. Uh, these puzzle pieces, feature, feature , uh, braille, UEB uh , braille, and they're actually ideal for ideal resource for, for both , uh, blind and sighted learners . We got a lot of feedback during test , uh, field testing that , uh, the bright colors, the contrast , uh, also , uh, track sided pi . So we love, love hearing that. Um, just wanna add that the puzzles are made from a water jet cut , PVC material. They're very durable and they're easy to sanitize for both the home and classroom environments.

Sara Brown: 17:53

Talk about Memory Puzzles, so what is new with them?

Bobby Fulwiler: 17:58

Thank you. Yep . So , um, as as we do as life, as life happens, we progress and we move forward. So APH and myself, we've done a lot of research , uh, a lot of , um, digging a lot of analysis on, you know, "what's the, what's the progression of these puzzles? How can we make this , um, more challenging? Should we keep it the same? Should we have different levels?" And what we've come up with , uh, with our third puzzle, which is called fruits and vegetables , uh, which will be coming out a little bit later this year , uh, we're thinking April , uh, 2025. Um, there is going to be a third removable piece , uh, in the top right corner. The second piece , um, that will also be tactile. It'll have , uh, texture on it as well. So into addition to putting the two puzzle pieces together, you'll have a third removable piece that also fits in the top right corner. Additionally , uh, we are going , uh, through the progression and we have made the left piece uncontracted, braille and the right piece contracted braille. So just following with our students, they can move along and start learning their contractions as well.

Sara Brown: 19:08

So can you talk about how one uses Memory Puzzles?

Bobby Fulwiler: 19:13

Absolutely. So following the BANA standards, of course, BANA is an acronym , uh, Braille Authority of North America, BANA. Uh, we use , uh, standard braille, and like I said, this is the shapes version. So there's geometric patterns , um, some common, some not so common. Uh, for example, square, triangle, rhombus , um, we , um, put the braille at the bottom and the , uh, band standard size. Uh, it has a raised tactile shape representing , uh, each piece of geometric drawing that we instituted on there that is also tactile. Uh, there is a braille indicator in the top right corner, so when you pull it out of the bag, it might be mixed and matched in there, which I think is half the fun . But once you get your real indicator in the top right corner, you'll get oriented, you'll know exactly where you are. And the best part is when it all comes together, the two pieces. Um, there is a wavy line in the middle that's also tactile that'll lets you know that you're finished.

Sara Brown: 20:15

And talk about the, the shapes expanding into Spanish.

Bobby Fulwiler: 20:22

Absolutely. So myself and as well as APH are trying to take on more of an initiative of , um, offering our products to everybody. And I have worked on a few Spanish initiatives in the past and we are gonna follow that same trend. Uh, welcome everyone at APH and I have come up with a exact replica of the Memory Puzzles Shapes, and it will be a Spanish version. Uh, it will be out this month, the month of March in the year 2025. And you can find it as an exact replica of the Shapes Original, just in , uh, full Spanish. So we're very, very excited about that. And if I haven't mentioned already, this is only $99 and is quota eligible. So it's a , uh, quick, easy, relatively inexpensive gift or tool for learning that you can get on the go.

Sara Brown: 21:16

That's super exciting. And tell us how listeners can purchase memory puzzles or shapes, or can you talk about the Spanish shapes?

Bobby Fulwiler: 21:26

Absolutely. So the easiest way to purchase would just be through www.ap.org. Uh, after that you would do slash product slash memory dash puzzles, dash shapes. That would be the easiest way to get , uh, to get that delivered to you , uh, through a's , um, shipping department. And to touch on the Spanish product just a little bit more , uh, that will be available later on this month , uh, March of 2025. And it will be the same exact 52 piece, 26 matching set. Uh, exact same thing that you were looking for , um, with your raised objects , uh, on your , uh, shapes. All the geometric patterns are exactly the same as the one in English. They are just produced in Spanish. So they should be an easy pickup and easy, an easy win, especially for, you know, e uh, you know, ESL students or students, anyone who's trying to learn a second language , um, that would be an ideal market for that.

Sara Brown: 22:29

And is there anything else you'd like to talk about or share?

Bobby Fulwiler: 22:34

No, I just want to thank everyone who's been a part of this. Uh, first I'd like to thank , uh, our vendor Waterjet Works in Dallas, Texas. They have been wonderful. Um , we've had a lot of wonderful fill testers and we're excited about for what the future holds. Again, we're looking into coming up with , uh, some additional puzzles at this level and then maybe some puzzles at a higher level for , uh, a more advanced, frail reader or , um, a student, you know, more progressed in their studies . So , um, let us know what you think. We're always open for suggestions and ideas and I'd love to hear from you . Thank you so much.

Sara Brown: 23:09

Alright, Bobby , thank you so much for coming today and talking to me on Change Makers.

Bobby Fulwiler: 23:14

Yeah, thank you Sara. This has been a pleasure. I , I appreciate you having me.

Sara Brown: 23:18

Thank you so much for listening to this episode of Change Makers. I've put links in the show notes for Charles Bonnet Syndrome, Esme's Umbrella, and Dr. Allen's email address as well as the Memory Puzzles. And do you have any podcast suggestions? Send them to me changemakers@aph.org. And as always, be sure to look for ways you can be a changemaker this week.