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 Syndrom...

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 car...

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 individua...

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...

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...

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. Wn...

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 d...

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 Bon...

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 d...

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...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond speaks with Jo Hill, who shares her experiences as a caregiver for her husband, Frankie. Frankie has been dealing with glaucoma for over 20 years and started experiencing CBS symptoms in December 2018. Jo discusses the challenges they faced, the path to discovering CBS through resources like Esme's Umbrella, and how they found s...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Dr. Phil Troyk, a professor and leading research innovator in the field of biomedical engineering at the Illinois Institute of Technology. Dr. Troyk discusses the FDA-approved Intracortical Visual Prosthesis (ICVP) project, which aims to help blind individuals perceive artificial vision by bypassing the eyes and optic...

In this episode of The Charles Bonnet Syndrome Podcast, host Shaimond interviews Dr. Nader Pouratian, a professor and chair of neurological surgery at UT Southwestern Medical Center in Dallas. Dr. Pouratian discusses his work on experimental treatments aimed at restoring vision for individuals who have lost it, specifically through the use of neural devices and deep brain stimulation. The conversa...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond speaks with Frank Hill Sr., who has experienced visual hallucinations caused by CBS for six years due to glaucoma. Frank shares his initial confusion about the condition and describes the vivid and intrusive visions he encounters daily seeing animals, unclear human figures and more. He credits his faith in God for helping him co...

In this episode of The Charles Bonnet Syndrome Podcast, Shaimond interviews Bettie Stanger-Black, who shares her journey as a caregiver for her mother who has CBS. Bettie recounts the initial signs of hallucinations, the diagnostic process, and her challenges as a caregiver. They discuss the importance of proper diagnosis, the emotional toll of caregiving, and various coping strategies. Bettie emp...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Eva and Kevin Potts, co-founders of Mary Carmel's Light. The organization, named in honor of their mother, was recently designated a 501(c)(3) nonprofit. They share their deeply personal and challenging journey of identifying and coping with Mary Carmel's Charles Bonnet Syndrome (CBS), including medical misdiagnoses a...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Selene Carboni, an art educator from Italy who specializes in teaching visually impaired individuals how to create and appreciate art. Selene discusses her journey from an art historian to advocating for the artistic capabilities of blind individuals. She shares her experiences working at the Francesco Cavazza Institu...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Melissa Carney, Community Outreach and Graduate Support Manager at Guiding Eyes for the Blind. Melissa shares insights into her role, the criteria for obtaining a guide dog, the training process for guide dogs, and her personal experiences as a guide dog handler. She discusses the application process, the importance o...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond welcomes Phyllis Stanger, who discusses her experiences living with CBS. Phyllis describes her journey from being diagnosed with macular degeneration to later developing CBS symptoms, which include visual hallucinations. She shares the challenges she faces, such as giving up driving and coping with daily hallucinations, and offe...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond talks with Eriko Watanabe, a blind artist from Augsburg, Germany. Eriko, originally from Japan, shares her compelling journey from losing her sight due to pediatric cancer to becoming an artist specializing in tactile line drawings. Despite her blindness, Eriko creates detailed artworks using raised line drawing kits and other m...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Dr. John Kennedy, a psychologist and senior investigator from the University of Toronto. Dr. Kennedy shares his extensive research on imagery, perception, and the fascinating abilities of blind individuals in creating art. He discusses his encounters with various visually impaired artists, elaborating on their experie...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Kim Kimberley who shares her personal experiences of living with CBS after sustaining a head injury from being assaulted. She discusses the nature of her hallucinations, interactions with medical professionals, and the coping mechanisms she has developed, including the use of LED lights and support from online communi...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Dr. Andrew G. Lee, a neuro-ophthalmologist and the Herb and Jene Lyman Centennial Chair of Ophthalmology at Blanton Eye Institute, Houston Methodist Hospital. They discuss Charles Bonnet Syndrome, a condition involving visual hallucinations due to vision loss, and explore why it is often misunderstood and stigmatized....

In this episode of The Charles Bonnet Syndrome Podcast Shaimond interviews doctoral candidate Aysha Kinakool from York University, the discussion covers various aspects of CBS. Topics include the complexity of studying CBS, patient experiences, and the necessity of raising awareness and education among healthcare providers. The conversation highlights the role of advanced neuroimaging techniques,...

In this episode of the Charles Bonnet Syndrome podcast, Shaimond interviews Ruth Bieber, a retired social worker and artist living with Charles Bonnet Syndrome (CBS). Bieber, who was diagnosed with legal blindness at age 6, shares her journey of losing central vision and later experiencing CBS. At 67, she reflects on her 25-year experience with CBS, during which she began seeing vivid, colorful ha...