The Charles Bonnet Syndrome Podcast
This podcast is for people with Charles Bonnet Syndrome (CBS), their caregivers, and allies. It's a space to offer awareness, information, support and hope. CBS is a condition that causes visual hallucinations in people who are blind or visually impaired. Host Shaimond Foye and occasional co-hosts interview people with CBS, their caregivers, ambassadors, PhDs, and medical professionals. We also explore broader topics relevant to the visually impaired community, providing helpful information and resources. Hosts and guests share their insights and research as we all work together to make a positive difference in the lives of people living with this condition.
Episodes
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...
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...
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 experienc...
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, t...
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 s...
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 mistoo...
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 s...
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 support from Dr. Gary Cusick. She hi...
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 nerve, directly stimulating the br...
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 conversation delves into the intricacies of...
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 cope. Throughout the discussion, Fran...
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 emphasizes the need for awareness, und...
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 and the lack of available resources....
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 Institute for the Blind and her research o...
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 of teamwork between the handler and ...
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 offers insight into how she manages her...
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 methods, translating her sensory exp...
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 experiences and his findings on Charles Bo...
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 communities. The conversation sheds light ...
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. Dr. Lee shares insights on the imp...
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