The Charles Bonnet Syndrome Podcast

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

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 [email protected] 

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

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 [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

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

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond welcomes guest Nancie Parker, a retired nurse who has firsthand experience with CBS. Nancie shares her journey of sudden vision loss due to aggressive glaucoma and her subsequent struggle with CBS. She discusses the challenges of coping with visual hallucinations, the importance of community support, and the role of advocacy in raising awareness about CBS. Nancie highlights her work with the CNIB in providing resources and support for individuals experiencing vision loss and CBS. This insightful conversation underscores the importance of acceptance, humor, and resilience in dealing with this condition.

Contact me at [email protected]

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

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

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

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond welcomes Evelyn Lewis, who shares her inspiring story of living with Charles Bonnet Syndrome (CBS). Evelyn details her lifelong struggle with visual impairments, beginning with her congenital condition Aniridia and subsequent battles with cataracts, glaucoma, retinal detachment, and cornea transplants. Despite significant visual loss and hallucinations associated with CBS, Evelyn speaks about her proactive approach to mental health, seeking therapy, and finding comfort in her faith and community activities. She also discusses the importance of acknowledging and sharing one's experiences, seeking medical and emotional support, and staying engaged in life. Evelyn's narrative is a testament to resilience in the face of ongoing challenges.

Contact Evelyn at [email protected]

Contact me at [email protected]

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

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

In this episode of the Charles Bonnet Syndrome Podcast, host Shaimond is joined by Dr. Marta Wnuczko, an experimental psychologist and professor at Humber Polytechnic. They discuss Dr. Wnuczko's research on how both sighted and blind individuals perceive and navigate their environments, and delve into the topic of hallucinations, including those experienced in Charles Bonnet Syndrome (CBS). Dr. Wnuczko shares her personal experiences with her great-grandmother, who exhibited symptoms of CBS, and provides insights into the nature of hallucinations, the importance of awareness, and coping strategies. The conversation also touches on her research methodologies, the balance between teaching and research, and the need to cultivate a curiosity-driven, positive approach to perception and human behavior.

Contact Dr. Marta at [email protected]

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond welcomes Shannon Glasgow, author of 'What They See, What We Know: Navigating Charles Bonnet Syndrome, Caregiving Without Losing Your Mind or Your Finances.' Shannon shares his profound journey as the caregiver for his mother, who suffers from Charles Bonnet Syndrome (CBS. He speaks about his transition from working overseas to dedicating his life to caregiving, the challenges he faced, and the emotional and financial impacts of his situation. Shannon also discusses the importance of awareness, support groups, and finding a balance between caregiving responsibilities and personal well-being. Tune in to learn more about Shannon's insightful experiences and his efforts to raise CBS awareness through his books and social media presence.

Contact Shannon at [email protected]

Purchase Shannon's book https://www.amazon.com/What-They-See-Know-Navigating-ebook/dp/B0F1NP58YK/ref=sr_1_2?crid=1OUYSYPGSX4C6&dib=eyJ2IjoiMSJ9.RH-n5yh47EugAKKZm9AH6wb2ACITfOoH8spEDY_hlWYOno0yVyjDDVykY_NaA3um-o6_N5mmhoVyUmo7_7SGew.60wyjbNP6Yl_42NxMyj5sSJhb1IrNTFjjhgpoBbFurI&dib

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

In this special 50th episode of the Charles Bonnet Syndrome podcast, host Shaimond celebrates the milestone with a panel of distinguished guests: Eva Potts from Mary Carmel's Light, Scott Muirden from the Charles Bonnet Syndrome Foundation in Australia, Duchess Antoinette McDonald-Ellis and her husband Ken Ellis. The discussion covers various updates and personal experiences related to Charles Bonnet Syndrome (CBS). Scott Muirden shares groundbreaking research from Australia, particularly the work of Vicki Hamilton at Griffith University focused on artistic representations of CBS experiences. Antoinette and Ken Ellis discuss their personal encounters with CBS and how art, music, and environment play roles in the manifestations of CBS. Eva Potts highlights the importance of awareness and the work being done by Mary Carmel's Light to support people with CBS. Additionally, Judith Potts from Esme's Umbrella in the UK provides a recorded message on new research findings, her ongoing projects, and the importance of educating the medical community about CBS, and Lucia Ricardo from Canada shares a congratulatory message regarding this podcast's 50th episode milestone. This episode underscores the global effort to raise awareness, the importance of combining art and science, and the crucial role of support groups in improving the quality of life for those living with CBS.

Mary Carmel's Light https://marycarmelslight.com/

Charles Bonnet Syndrome Foundation https://www.charlesbonnetsyndrome.org/

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

In this episode of the 'Charles Bonnet Syndrome Podcast,' host Shaimond invites Karen Tan-Sy to share her experiences living with Charles Bonnet Syndrome (CBS) while caring for her mother with Dementia. Karen discusses the fluctuating nature of her eye condition, dealing with multiple diagnoses including Sjogren’s Syndrome, and the mental and physical challenges she faces daily. The conversation delves into how she initially mistook her hallucinations for supernatural occurrences, leading to her CBS diagnosis. Karen also speaks about the delicate balance of managing her own treatments, medications, and doctor's visits while being a 24/7 caregiver. Additionally, the episode highlights the importance of support groups like Dr. Gary Cusick's weekly CBS group, coping strategies for CBS, and the value of external support systems. Karen's story is one of resilience, highlighting the importance of taking life 'one moment at a time' amidst life's complexities.

Contact Karen at [email protected]

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

In this episode of the Charles Bonnet Syndrome Podcast, host Shaimond explores the concept of syndromes in medicine. The episode delves into the definition of a syndrome, its history, and how it differs from diseases and disorders. Key characteristics of syndromes are discussed, along with examples like Down Syndrome and Charles Bonnet Syndrome. The importance of pattern recognition in diagnosing syndromes, the evolution of their study, and their impact on patient care are also covered. This comprehensive overview aims to enhance understanding of syndromes for patients, caregivers, and curious listeners.

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

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

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate