Episode 57: Chris Hord on Glaucoma, Charles Bonnet Syndrome, and Advocacy Through Prevent Blindness

Episode 57: Chris Hord on Glaucoma, Charles Bonnet Syndrome, and Advocacy Through Prevent Blindness

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/ [https://preventblindness.org/the-focus-on-eye-health-podcast/]  Learn more about Chris’s music:  https://m-project.net/ [https://m-project.net/]  Contact Chris: https://m-project.net/contact/ [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

Episode 56: Dr. Leonid Skorin Jr. on His New Book, Charles Bonnet Syndrome, and Visual Hallucinations

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 [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 [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 [https://cbsyndromepodcast.com/merchandise] Donate: https://ko-fi.com/cbsyndromepodcast [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

Episode 55: A Poetic Journey Through CBS

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

Episode 54: Nancie Parker’s Journey with Charles Bonnet Syndrome, Advocacy, and Resilience

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 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 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

Episode 53: Living with Charles Bonnet Syndrome: Evelyn's Journey of Strength and Resilience

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 evelyn19lewis@gmail.com 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 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]