Host Shaimond interviews Christopher Hord, a writer, editor, vision health advocate, and host of Prevent Blindness’s monthly Focus on Eye Health Podcast. Hord describes rapid vision loss from glaucoma in early 2021, transitioning from manageable eyesight with glasses to legal blindness, with complete loss in his right eye and usable vision in his left. He shares experiencing Charles Bonnet Syndrome (CBS), including vivid hallucinations of crowds in the street and people in his home, later shifting mostly to patterns and textures after learning the condition’s name from his doctor; he also notes taking mirtazapine for bipolar disorder and later learning it is sometimes used for CBS. Hord explains Prevent Blindness’s ASPECT advocacy training and Capitol Hill lobbying, encourages community involvement, discusses adjusting to vision loss, using a white cane after mobility training, and previews releasing a cover of Neil Young’s “Ohio” under his The Manhattan Project.

Listen to Chris’s podcast:

https://preventblindness.org/the-focus-on-eye-health-podcast/

Learn more about Chris’s music:

https://m-project.net/

Contact Chris:
https://m-project.net/contact/

For help with CBS, call 1-704-389-0160

For a link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and CBS caregivers support group, email Dr. Cusick at garymcusick@icloud.com

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email garymcusick@icloud.com

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email judith@charlesbonnetsyndrome.uk

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email scot@charlesbonnetsyndrome.org

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate: https://ko-fi.com/cbsyndromepodcast

00:00 Welcome and Guest Intro

01:13 Christopher’s Vision Loss Story

02:51 Prevent Blindness and ASPECT

06:13 Focus on Eye Health Podcast

08:44 Living With CBS Hallucinations

14:47 Coping and Treatment Insights

18:22 Advocacy Training Explained

25:41 Music Career and New Single

32:21 Helping Others Adjust

35:33 Remaining Vision and Tech Challenges

38:52 Grief, Mindset, and Hope

41:03 Using a White Cane

44:13 Get Involved and Closing

Host Shaimond welcomes board-certified neuro-ophthalmologist Dr. Leonid Skorin Jr., returning guest and medical director/board member of Mary Carmel’s Light, to discuss his new book, "Charles Bonnet Syndrome and other Visual Hallucinations: Clinical Diagnosis and Management." Skorin explains he wrote it to broaden clinician awareness beyond neurology-focused literature and to help patients and caregivers, recruiting contributors including retina specialists, optometrists (including low-vision), an occupational therapist, and a psychologist, and involving trainees to encourage future research. The book covers negative vs. positive visual phenomena, illusions, hallucinations, entoptic phenomena, low-vision approaches, and 12 narrative case reports; he reads a case of a 100-year-old woman with CBS after severe vision loss. He also shares CBS history from Charles Bonnet’s 1760 account, discusses stigma, counseling, vision optimization, and provides publisher/discount details and online bonus materials.

Book Title: Charles Bonnet Syndrome and other Visual Hallucinations: Clinical Diagnosis and Management.

Book’s ISBN Number: 9781041059868

Publishers Website to Purchase Book:

https://www.routledge.com/Charles-Bonnet-Syndrome-and-Other-Visual-Hallucinations-Clinical-Diagnosis-and-Management/Skorin-Cusick/p/book/9781041059868

Discount Code: 20% Discount with Code 26AFLY1

Code expires on June 30, 2026

Contact me at cbsyndromepodcast@gmail.com

For help with CBS, call 1-704-389-0160

For a link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and CBS caregivers support group, email Dr. Cusick at garymcusick@icloud.com

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email garymcusick@icloud.com

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email judith@charlesbonnetsyndrome.uk

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email scot@charlesbonnetsyndrome.org

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate: https://ko-fi.com/cbsyndromepodcast

Chapters:

00:00 Welcome and Guest Intro

02:09 Why Write This Book

03:10 Building a Multidisciplinary Team

06:04 Teaching Story Behind the Book

08:54 What Readers Should Gain

13:44 History of Charles Bonnet

18:19 Defining CBS Key Features

24:33 Pseudo Hallucinations Explained

25:20 Ancient Cataract Surgery

28:20 Why Hallucinations Get Complex

30:58 How Common Is CBS in Clinic

32:35 Student Finds Hidden Cases

33:23 Explaining Phantom Vision

35:26 Counseling And Resources

36:53 Treatments That Can Help

38:16 Idea For CBS Clinics

39:32 Why Some Get CBS

41:00 How The Book Helps

46:10 Case Report Read Aloud

51:05 Autoscopy And Community Insights

53:21 Where To Buy The Book

56:36 Bonus Online Materials

57:52 Final Thanks And Wrap

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond Foye welcomes back Duchess Antoinette McDonald-Ellis, a performance artist and creator. Antoinette shares a powerful poem that encapsulates her experiences living with Charles Bonnet Syndrome, illustrating the complexities of her relationship with the condition. The conversation delves into the daily struggles faced by individuals with CBS, including moments of confusion and fear, and how creative expression serves as a coping mechanism. Antoinette recounts a unique experience during a choir performance where she encountered a giant dancing Eskimo, highlighting the unpredictable nature of CBS. The episode concludes with a discussion on the importance of open conversations about CBS and the support within the community.

00:00 Introduction to The Charles Bonnet Syndrome Podcast

02:21 Antoinette's Poem: A Love Note to Charlie B

09:08 Understanding Charles Bonnet Syndrome Through Art

14:39 Experiencing Charles Bonnet Syndrome During Performance

20:09 Navigating Conversations About CBS

Contact me at info@cbsyndromepodcast.com

For help with CBS, call 1-704-389-0160

For a link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and CBS caregivers support group, email Dr. Cusick at garymcusick@icloud.com

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email garymcusick@icloud.com

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email judith@charlesbonnetsyndrome.uk.

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email scot@charlesbonnetsyndrome.org

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate: https://ko-fi.com/cbsyndromepodcast