The Charles Bonnet Syndrome Podcast

In this episode of The Charles Bonnet Syndrome Podcast, host Shaimond welcomes Professor Robin Walker, a cognitive neuroscientist from Royal Holloway, University of London. They discuss Dr. Walker's extensive research on visual perception and macular degeneration, and his current focus on Charles Bonnet Syndrome. The conversation delves into a reading app he developed to aid people with macular de...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond interviews Richie Kahn, a public health professional, clinical researcher, and patient advocate. Richie shares his personal journey with optic atrophy and Charles Bonnet Syndrome. With a background in public health and a passion for patient advocacy, Richie talks about his career in clinical research, his efforts to reduce ineff...

In this episode of the Charles Bonnet Syndrome podcast, host Shaimond delves into Cognitive Appraisal Theory, a psychological framework that explains how our interpretations of events shape our emotional responses. He explains the two stages of cognitive appraisal—primary and secondary—and provides therapeutic techniques such as cognitive restructuring, mindfulness, and several other therapies lik...

In this episode, Shaimond interviews Dr. Kat Da Silva Morgan from Newcastle University's Translational and Clinical Research Institute. Dr. Morgan discusses her extensive research into Charles Bonnet Syndrome (CBS), explaining her journey from psychology to neuroscience and her focus on visual hallucinations. She elaborates on the unique aspects of CBS compared to other conditions that cause hallu...

In this episode, Shaimond and guest host Duchess Antoinette McDonald-Ellis welcome cognitive neuroscientist Dr. Jennifer K Steeves from York University. Dr. Steeves discusses visual and sensory processing, emphasizing her research on Charles Bonnet Syndrome (CBS). She recounts her discovery of CBS through collaborative research and shares insights into non-invasive brain stimulation techniques lik...

In this episode, Shaimond welcomes Dr. Anica Zeyen, a UK-based researcher who has CBS and cone-rod dystrophy. Dr. Zeyen shares her experiences with vision loss and the onset and development of her CBS symptoms. She offers insights into coping mechanisms and discusses how trust, relationships, and communication play a crucial role in managing the condition. The conversation also delves into Dr. Zey...

In this episode, Shaimond and guest host Dr. Gary Cusick welcome Sam Seavey, an online health advocate for the blind community and owner of the popular YouTube channel 'The Blind Life.' Sam shares his journey with Stargardt's disease and how it took him decades to fully accept his visual impairment. He discusses his work at the Bluegrass Council of the Blind and his YouTube channel, The Blind Life...

In this episode, Shaimond welcomes Nina Chesworth, a volunteer with Esme's Umbrella, to share her personal journey and insights into living with Charles Bonnet Syndrome (CBS). Nina discusses the complexities of her vision loss stemming from a viral infection and subsequent accidents, leading to her current state of blindness. She candidly describes her CBS experiences, including persistent and som...

In this episode, Shaimond shares a comprehensive guide to coping with Charles Bonnet Syndrome (CBS). He covers general tips, coping mechanisms, natural remedies, and innovative treatments gathered from people with CBS and experts in the medical and research field. Key topics include recognizing hallucinations, stress management, utilizing support groups, and various therapeutic techniques. Listene...

In this episode, Shaimond and Antoinette interview Lucia Ricardo, a program lead at the Canadian National Institute for the Blind (CNIB). They explore the condition's history, personal experiences, the importance of awareness among medical professionals, and the impact of peer support. Lucia shares insights into the CNIB's efforts in supporting individuals with CBS, including the creation of a sup...

In this episode, Shaimond interviews Vicky Hamilton, a PhD candidate performing research on Charles Bonnet Syndrome (CBS) at Griffith University, Queensland College of Art and Design in Brisbane, Australia. Hamilton shares her journey with CBS. Utilizing art and digital technology, Hamilton's research focuses on recreating the visions experienced by those with CBS, aiming for a broader understandi...

In this episode, Shaimond interviews Megan Chapman, an occupational therapist specializing in low vision, from Low Vision Works in Sarasota, Florida. They discuss the role of occupational therapy in helping individuals with low vision, including those suffering from Charles Bonnet Syndrome (CBS). Chapman explains the broad scope of occupational therapy. She also shares her journey into specializin...

In this episode, Shaimond and guest co-host Dr. Gary Cusick interview graphic novelist and researcher Gareth Brookes. Brookes discusses his graphic novel, “A Thousand Coloured Castles” which features a main character with Charles Bonnet syndrome (CBS). Inspired by his grandmother's experiences with the condition, Brookes aims to raise awareness and empathy by portraying the visual hallucinations a...

In this episode, Shaimond interviews Dr. Jasleen Jolly, Associate Professor in Vision and Eye Research at Anglia Ruskin University in Cambridge, England and Director of Jolly Vision Science. Dr. Jolly discusses her extensive work and research on Charles Bonnet Syndrome. She explains the misconceptions about the syndrome, its prevalence and highlights the importance of asking patients proactively a...

In this episode, Shaimond interviews Scot Muirden, Director at Charles Bonnet Syndrome Foundation AU. He explains the mission of the Foundation, which includes providing direct services to those affected by CBS and raising awareness within the medical and healthcare sectors. The conversation covers the importance of a multidisciplinary approach to diagnosis and support, potential triggers of CBS,...

In this episode, Shaimond interviews Robin Davies who is totally blind and shares his journey with Best disease and Charles Bonnet Syndrome. The episode emphasizes resilience, the value of community and support, and how remaining engaged with life and passions can help navigate the challenges of visual impairment and Charles Bonnet syndrome. Contact Robin at robindavies18@gmail.com For help with C...

In this episode, Shaimond interviews Chris Wilsdon a representative from the Kent Association for the Blind, to discuss Charles Bonnet Syndrome (CBS) and how his organization supports the visually impaired in Kent and parts of London, UK. Wilsdon shares his personal journey from experiencing vision problems to dedicating over 15 years to aiding those with vision impairments. The episode highlights...

In this episode, Shaimond interviews Tanya Straker, who shares her journey as a caregiver and discusses her book “6 Life Hacks For Family Caregivers,” her weekly caregiver support group, Coffee with Caregivers, and shares tips to help caregivers manage, among other things she does to support people on their journey to being their best self. For more information about Tanya and for a link to join h...

In this episode, Shaimond and Eva interview Susan Michel who shares her journey with Retinitis Pigmentosa, Macular Degeneration and Charles Bonnet Syndrome. For help with Charles Bonnet Syndrome call 1-704-389-0160 Contact us at info@cbsyndromepodcast.com 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 garymcus...

In this episode, Shaimond and Eva interview Dr. Leonid Skorin, an ophthalmologist at the Mayo Clinic. He gives an ophthalmic view of Charles Bonnet Syndrome. Contact Dr. Skorin at Skorin. Leonid@mayo.edu For help with Charles Bonnet Syndrome call 1-704-389-0160 Contact us at info@cbsyndromepodcast.com For a link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and CBS caregi...

In this episode, Shaimond and Eva interview Irvine Harris who shares his journey with Macular Degeneration and Charles Bonnet Syndrome. Contact Irvine at harrisfl@gmail.com Irvine’s website https://savinghumanity.net/ For help with Charles Bonnet Syndrome call 1-704-389-0160 Contact us at info@cbsyndromepodcast.com For a link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group...

In this episode, Shaimond interviews Esme’s Umbrella founder, Judith Potts. She shared how she first became aware of Charles Bonnet Syndrome (CBS) when it affected her mother and how she founded Esme's Umbrella, her Charity that focuses on raising awareness, offering support and sourcing funding for research for CBS. Contact Judith Potts at judith@charlesbonnetsyndrome.uk Esme’s Umbrella’s website...

In this episode, Shaimond and Eva interview Dave Hommel who shares his story as a caregiver for his mother who has journey Charles Bonnet Syndrome. Contact Dave at williamdhommel@gmail.com For help with Charles Bonnet Syndrome call 1-704-389-0160 Contact us at info@cbsyndromepodcast.com For a link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and CBS caregivers support gr...

In this episode, Shaimond discusses who Charles Bonnet was. For help with Charles Bonnet Syndrome call 1-704-389-0160 Contact me at info@cbsyndromepodcast.com 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 UK, please visit https://www.charlesbonnet...

In this episode, Shaimond and Eva interview Theo Blue who shares his journey with Glaucoma and Charles Bonnet Syndrome. Contact Theo at theomblue@gmail.com For help with Charles Bonnet Syndrome call 1-704-389-0160 Contact us at info@cbsyndromepodcast.com 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 garymcusi...