The Tactile Traveler Episode 6 Explores Charles Bonnet Syndrome, Social Distancing Tips and More

Apr 30, 2020

On today’s program we look at: an increase in Charles Bonnet Syndrome symptoms for some people who are social distancing and the way we might be able to reduce that increase, an interview with last year’s winner of the James Holman prize for blind ambition, a way to prevent hurting your back if you’re blind in one eye, a cell phone accessory that takes stress out of traveling, and tips on how to keep your guide dog and pet dogs in tip-top shape while social distancing.

Nick Isenberg edits audio at his home studio.
Credit Lucas Turner/KDNK

From KDNK Community Access Radio Carbondale, Colorado, in the United States this is program #6       of the TACTILE TRAVELER-EMPOWERING BLIND AND LOW VISION PEOPLE TO EXPLORE THE WORLD AND HELPING OUR SIGHTED FRIENDS SEE THE WORLD IN A NEW WAY.
 

I’m Nick Isenberg.

When blind people go places, we don’t experience things like our sighted friends. We don’t see beautiful mountains, or romantic sunsets. The goal of this program is to identify and even create experiences that are more meaningful, or just more fun for us and our sighted traveling companions.  Frequently when people lose their eyesight, they become more and more isolated.

The Tactile Traveler hopes to empower people to go not only literally around the world, but around the block to new adventures in their lives. 

Blind ranges from people who are visually impaired and glasses and contact lenses no longer allow them to lead a normal life to people, like me who are totally blind, to sighted parents who have a blind child to blind parents who have sighted children. And, people of all ages, interests and physical abilities.  

Because of the Coronavirus and social-distancing we have a challenging problem; producing a travel program for people who can’t go anywhere. 

On today’s program we look at an increase in Charles Bonnet Syndrome symptoms for some people who are social-distancing and the way we might be able to reduce that increase, an interview with last year’s winner of the James Holman prize for blind ambition, a way to prevent hurting your back if you’re blind in one eye, a cell phone accessory that takes stress out of travelling, and tips on how to keep your guide dog and pet dogs in tip-top shape while social-distancing.  

Our first story is about a problem some people have because they can’t travel more than a short distance from their homes. It’s an increase in Charles Bonnet syndrome symptoms.

Dr. Prem Subramanian: “Charles Bonnet Syndrome is a fascinating condition, I know some of you listeners might be familiar with it because you've recently interviewed someone about it. It is a condition where people who have lost vision, start to experience unusual visual symptoms, which has been described as hallucinations. They may start to see people, they may see forms or shapes, they may see animals, they may see places where they have been. These may be specific things they have seen before or things that are similar to what they’ve seen before and it’s strikingly common in people who have lost vision for a wide variety of reasons. And it can occur in people who don’t have what we think of as severe vision loss, any vision loss seems to potentially trigger it.”

Nick: University of Colorado medical school professor and neuro-ophthalmologist, Dr. Prem Subramanian, MD, PhD. Charles Bonnet Syndrome is a normal part of going blind for many people. Dr. Subramanian says it can get worse as we get more isolated:

“Charles Bonnet syndrome almost like definition is going to be worse when people are in an environment where they're not with others. So one of the features of Charles Bonnet syndrome, I mentioned, that people have these hallucinations seeing things that aren’t there, they almost always recognize those things aren’t real. And, one of the ways that they can distract themselves, if you want to think about it that way, is to go and do something else or to be interactive with another person or to be engaging in activities. So, now with the COVID-19 crisis and with people being told to stay at home, in that setting it's known that people who suffer from Charles Bonnet syndrome are more likely to experience their symptoms. In addition, people who have the condition have been studied, they have reported when they are in a more isolated situation their symptoms get worse.”

Nick: There are a lot of listeners who have Charles Bonnet syndrome who have been afraid to say anything to anyone because their doctors never told them that they might experience it, or what’s going on if they already have it.

Bite: “My doctors sometimes don’t think about it because unless you are a neuro-ophthalmologist or maybe a retina-specialist, takes care of a lot of patients with decreased vision that we can’t fix. We don’t think about the fact that Charles Bonnet syndrome is pretty common. I think we also get that the patients can be really scared by this phenomenon and that they may think that they’re going crazy and they may not want to tell us that they are having these symptoms. So, I think it’s a combination of things. We as eye doctors don’t like to admit we can’t fix some things and we don’t want to scare our patients by telling them that they could have these hallucinations. I try to tell people about it proactively and I have been surprised by the number of patients who tell me, ‘Oh yeah doctor, I’ve already experienced that. Thank you so much for mentioning it.’”

Nick: I live alone and my Charles Bonnet syndrome went nuts. I had a hard time learning braille. So I went to a hypnotherapist to see if he could help me. He didn’t help me with Braille but he did help me with some other things. And he taught me how to do self-hypnosis. So I thought I’d try it to see if I could eliminate my Charles Bonnet syndrome. The new patterns I’ve been seeing have almost disappeared, and I have been Charles Bonnet syndrome free for a couple of hours at a time

Dr. Subramanian was intrigued. So I made some phone calls to see if other people have found self-hypnosis to be useful.

Judith Potts, from Esme’s Umbrella, the foundation working with people with Charles Bonnet syndrome in the United Kingdom, said she had heard of a couple of other people in England who have also been helped by self-hypnosis.

My hypno-therapist was Lee Windner: “Step one, know your outcome. What is it that you want to do, be, or have. Stated in the affirmative. Instead of saying, ‘I don’t want to feel this way anymore.’ Say, ‘I feel strong, I feel healthy, I feel balanced, I feel compassionate, I feel driven.’. Whatever the outcome is that you’re looking for. Stated in the phrase ‘I am’. When you state it in the affirmative. If you state it in terms of ‘I am’, it means that you’re already there which is about as soon as you could possibly want it. These people say, ‘Well, my parents were like dictators. They used a very firm, blunt, direct tone of voice. And that has always worked well for me.”

An associate of Dr. Subramanian defined Charles Bonnet syndrome as, “When you start to lose your vision, your brain gets bored, so it creates hallucinations to keep busy.” 

So, my self-hypnosis consists of taking three deep breaths, each one a little bit longer and a little bit deeper as I’m lying in bed waiting to fall asleep, and then saying to myself  “my optic nerve and the part of my brain it connects to are relaxed making me Charles Bonnet's Syndrome free.”

If self-hypnosis is helping you, please let us know by sending us an email to: thetactiletraveler@gmail.com

You're listening to The Tactile Traveler on KDNK. I’m Nick Isenberg. 

In the midst of the pandemic, setting off on an across the globe journey seems like a distant dream.  Fortunately, Mona Minkara is letting us live vicariously through her. The Tactile Traveler’s Jason Strother speaks to her about her YouTube series Planes, Trains and Canes.

JASON S PLANES TRAINS CANES 

Even though Mona Minkara proudly displays her long white cane as she jetsets across four continents, sometimes she has to remind people, like this airport agent that pointing to a departure gate isn’t really helpful.

(background noise of airport terminal, voices)

Mona: “Sorry, I’m blind. I can’t see where you point.”

In Planes, Trains and Canes, Mona takes viewers along with her to show how a visually impaired person can travel across the globe.

(short Music Intro to Mona’s show)

Mona: “Hi, I’m Mona Minkara. My goal is to be like a blind Anthony Bourdaine. He gave you a taste of the local food, I’ll give you a taste of the local public transportation.”

Mona takes us to her home in Boston, to London, Johannesburg, Istanbul, Singapore and Tokyo, and all of her videos are audio described too.

(Turkish music with and audio description “Crowded Square with Mosque in the background” )

Mona wrapped up her 2 week International adventure just before the Covid-19 pandemic brought travel to a screeching halt. And now like many of us, the 32 yr-old is practicing social distancing.  She’s a bio-engineering professor at North Eastern University and virtually teaching her courses.

Mona: “It’s been a really interesting ride. I moved out to my family’s home. We are all kind of here together.  There’s still the final exam.  I’m trying to maintain my research.  So, I’m trying to think of it as mentally adventuring.” (laughing)

Planes, Tranes and Canes is sponsored by the San Francisco Lighthouse for the blind and visually impaired’s Holman Prize. It’s an award aimed at inspiring people with no or low vision to explore the world. Mona explains she has just about 2% of vision left in her left eye and only has some light perception in her right.  She says she wanted to focus her video series on public transportation because many car-driving Americans don’t realize how important mass transit is for people like her.

Mona: “A city with public transportation is a city that allows me to be free; to do what I want to do to navigate efficiently.  It’s very powerful, ya know, as a blind person to be like “hey I got this, like, even better than you, car-driving person.”’

Let’s face it, most American cities are not known for their public transportation. Mona said London’s underground was huge,  Istanbul’s trains were new, but it was Tokyo’s metro system that made her a little jealous.

Mona: “Tokyo was the city that really ruined me for public transportation anywhere else (laughing).  Every train line had a different musical tone (chime in background) that played when the doors opened, so you knew which line you were getting.  And some lines apparently, if you ride from beginning to end every stop had a different musical tone and would create like a song. I felt like I was in one big video game. (digitized chimes)

But even though the city has an accessible public transit and all these catchy jingles, Mona says something else was lacking.

Mona: “The second you step into a restaurant, there was so much atomization that if you were by yourself as a blind person I don’t even know how you would be able to order food.”

Mona wasn’t completely alone on her journey. Natalie, her camera woman, came along with her.  But the two had a pact.  Mona wouldn’t ask for help and Natalie wouldn’t offer it. Mona says it was the best way to film a documentary about travelling independently as a blind person.

Mona: “Natalie number one, was extremely good at distancing herself from me. Like, she followed my lead. Which requires a lot of trust, right?!

But, there were a couple times when the pact had to be broken. 

(street sounds, honking) Like when Mona was almost hit by a car in Johannesburg

Mona:  A silver car comes out of nowhere...(audio from documentary of almost getting hit “wow! wow”)

That was a close call. 

Mona meets plenty of people in her travels who are more than happy to help her with a bag or point her in the right direction.

Mona: “ Excuse, Is there a ramp?” 

Stranger: “I can guide you there.” 

Mona: “Thank you very much!”

Stranger: “ No problem at all!”

But sometimes she was ignored.  

Mona: “Excuse me. Do you know where the lift is? Excuse me, which way to the central line?”

And now and then her smartphone was useless.

Siri: (beep beep) “Is that the one you’re looking for?”

Mona: “ yes.”

Siri: “uh oh. We lost the connection. Let me try that again. Perfect. I can call…”

But there was one time when Mona faced real pushback while trying to assert her independence.

Mona: speaking to a transit worker  “Well then don’t, forget it. well treat me like anybody else”

Transit worker: “We can't, I'm afraid.”

Mona: “Why?”

A London transit worker told Mona that it was official policy to not allow unaccompanied blind people onto the train.

Mona: “He kept on saying it wasn’t my choice. But I kept on trying to understand why it wasn’t my choice to decline this assistance.  I think people project their fears of being blind upon us.

(Audio conversation with transit worker) Mona: “How is it not my choice??”

But Mona pushed back and in the end she won.  After checking the rules the transit worker acknowledged that blind people do have the right to decline assistance.  Mona says she understands how solo travelling can be intimidating or frustrating for visually impaired people. But through some of the downs and many of the ups of her own journey, Mona says she came away with an even greater sense of self empowerment.

Mona: “The second I came to peace with being ok with getting lost or recognizing that I may not be as efficient as the next person navigating, a weight was lifted.  A state of mind was achieved in being more free. Like I think that is something I learned…”

(Audio from documentary) Mona: (singsong voice loudly) “I’m going on a Safari tour!”

And while we all wait for things to get back to normal so we can head off on our own adventures, we at least have Mona’s Trains, Planes and Canes, even if the videos do make us a little envious.

(Outro fade of Documentary Audio Mona thanking someone for giving directions)

Nick: “Jason, how far along is Mona in her series of countries and cities?”

Jason: “Well Nick, Mona has wrapped up all of her world travels and most of the videos have been uploaded to YouTube already, but her last two episodes on Singapore and Tokyo, they will drop throughout the spring.”

Nick: “Where did she get the money to do this?”

Jason: “The Planes, Trains and Canes series has been sponsored by the Holman Prize. Now, that’s an award given out by the San Francisco Lighthouse for the blind and visually impaired.  It’s named after a 19th century blind British explorer whose perhaps the first visually impaired person to travel around the globe. So for the past few years the Lighthouse in San Francisco has been offering this award to a handful of recipients to encourage other people with visual impairments to travel.”

Nick: “Thank you, Jason.”

It can be extra easy to hurt your back if you’re blind in one eye, or have one eye that sees much better than the other one.

Lidia Ecker has a tip you might find useful:`

A good way to screw up your back is to twist and bend at the same time. When we drop things, our automatic response is to immediately bend down and pick them up. 

If you have vision in both eyes, you can see what you’re reaching for and it makes it easier. However, if you only have vision in one eye and what you drop isn’t directly below, your automatic response is to twist so what you’re reaching for is directly in front of you.

A better way is after you drop something, STOP. Then turn YOUR WHOLE  body SO  that you’re looking straight down at the thing you WANT TO PICK UP  and THEN BEND your knees and then waist, or kneel DOWN to pick it up.

And, when you’re grabbing your suitcase, first make sure it’s in front of you before you reach for it.    

Nick: “Thank you Lidia. Simon Bonafont has a report on a cell phone accessory that can take a lot of stress out of your life when you’re travelling.”

SIMON STORY HERE - Battery Banks

Simon: “It’s called a battery pack. It’s an extra battery that’s about the size of my iphone. I can use it to charge my iphone when I’m out and not at home.  I can use it to charge any other electronics that use a USB plug.  It fits in a backpack, purse, and it even fits in my pocket. I never have to worry about my phone dying. It takes a lot of stress out of travelling.  They usually are designed to charge your phone for 24, 48, or 72 hours of continuous use. They even have battery packs that will talk, especially designed for us.  It’s called the Mophi power station.  I got mine from Amazon for about $20.00

Nick: “Thank you, Simon.”

You’re listening to the Tactile Traveler on KDNK.

I’m Nick Isenberg.

Even though guide dogs are free to the people that use them, they’re expensive to raise and train. $50-$75,000 each, depending on how guide dog schools determine their costs.
 

Plus, each dog requires a huge number of volunteers. For example guide dogs of the desert in Palm Springs California, figures that it takes 22 volunteers in addition to their paid staff to raise and train a dog at many guide dog schools.

The blind and low vision people who use guide dogs are called handlers and the handler’s and their dogs make up a team. Since handlers have to practice social distancing, so do their dogs.  

That means their dogs are no longer regularly crossing busy streets, using mass transit, going into restaurants, stores, offices, or just getting lots of exercise.

It’s important to make sure guide dogs don’t lose all the skills. So many people spent so much time and so much money helping them learn. 

Phyllis Chavez has some suggestions from experts on how to keep your dog in tip-top shape.

Phyllis: “You can use these tips on your pet dog too.”

Bite: Ellie-inClement whether.wav:  “This time is just an extension of inclement weather. When sidewalks are icy or just extreme temperatures one way or another. We can play with our dogs indoors.” 

  

Phyllis: “White cane and guide dog travel instructor, Ellie Carlson.”

Bite: Ellie Carlson-Dottie push-ups “Dogs need mental stimulation and physical stimulation. It actually wears them out faster to do mind games. Obedience, hide and seek, puppy push ups (sit down, sit, down, sit down). That will wear them out faster than a three-mile hike.”

Melissa Smith: “Another popular way of keeping dogs enriched is puzzle toys. Instead of feeding the dogs kibble into a dog dish, you load the kibble into this puzzle toy. The dogs have to really work at how to open, or manipulate, and turn, and roll this toy to dispense all the kibbles out of it. It's going to take them longer and keep their mind active and their paws and their mouth active for a few minutes rather than just gulping down and inhaling a dish of food.”

 

Phyllis: “Melissa Smith is the Colorado field trainer for guiding eyes for the blind Yorktown New York.”

Melissa Smith: “One of my favorite games to do with dogs in the house or even the backyard is to play hide and go seek, it’s a really fun game. Labradors are a hunting breed, so it really ignites that hunting instinct and they have a ton of fun with it. So,  basically you would have your dog sit and wait in a certain position in your house or you can have your family member hold the dog. And then you’ll go hide somewhere. Start off simple. Hide behind a wall or behind an open door and then call your dog to you and they have to come find you. And as they get good at it you can make it harder and harder depending on the layout of your home or backyard. And again, it's an obedience exercise because you’re still working on ‘come’, you’re just making it into a more fun game. And when the dog finds you I would still have a good food reward or their favorite toy to have a game. And you can go hide again or you can hold the dog and have your family member go hide and have them search for your family member. So, be patient with your guide dog, check in with yourself, you have to take care of yourself first and foremost and I think when we get anxious and stressed our dogs pick up on that. Luckily human animal bonds are so strong and I think that these dogs really provide a strong level of stress relief in itself. But, just remember to be patient with your dogs. This is stressful for all of us and I think we're all struggling a little bit. Check in with yourself, breathe, take your time. If you’re frustrated or not in a good frame of mind maybe that's not a good time to do obedience. Have a game of hide and go seek or maybe your dog just needs something to chew on so you can go have time for yourself as well”

 

Nick: “Phyllis, how are things going with you and your guide dog?”

Phyllis: “Kyla and I are doing very well.  We take walks daily and do doggie pushups.”

Thank you, Phyllis.

We are very proud to announce that the Colorado broadcasters Association has named the Tactile Traveler the 2020 best public-affairs radio program for small and medium market stations. Carbondale Colorado has about 7000 residents. 

We’re also proud to announce that beginning on Program number 5 we have become a radio program for the deaf.  When you go to Tactile Traveler on the internet or as a podcast you can now click on a link for a transcript of the program.  That makes it possible for our deaf blind listeners to follow the show.  Many people who are deaf blind have a digital braille display which will act as a computer and upload the program directly or will connect to the internet and change the text to braille.

This is the Tactile Traveler on KDNK. I’m Nick Isenberg

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It’s my talking scale reminding us that we’d like you to weigh in on how we're doing. Please let us know by sending a e-mail to thetactiletraveler@gmail.com 

We spell traveler the American way with one  “L”.

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and in additional states.

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We like to thank the following people who help make TODAY’S program possible:
 

Microsoft disability Tech Support 

Humanwear Tech Support

Apple accessibility tech support

Lorraine Hutchinson

John grace

Paula Freund

Debbie O’Leary

Sophia Williams

Sarah Williams

Trevor Swank

Lucas Turner 

And Raleigh Burley

I’m Nick Isenberg. This has been TACTILE TRAVELER-EMPOWERING BLIND AND LOW VISION PEOPLE TO explore THE WORLD AND HELPING OUR SIGHTED FRIENDS SEE THE WORLD IN A NEW WAY. This has been a production of KDNK community Access Radio, Carbondale, Colorado.