The Charles Bonnet Syndrome Podcast

Shaimond Foye

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. Hosts and guests share their insights and research as we all work together to make a positive difference in the lives of people with this condition. read less
Health & FitnessHealth & Fitness

Episodes

Episode 31: Patient Advocate Richie Kahn
Yesterday
Episode 31: Patient Advocate Richie Kahn
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 inefficiencies in drug development, and his work through Canary Advisors to incorporate the patient perspective into clinical trials. Richie also discusses his coping strategies for Charles Bonnet Syndrome, the importance of laughter, running, using a white cane, and the critical need for raising awareness and education about vision loss and associated conditions.Contact Info:richie@canaryadvisorsllc.com https://www.linkedin.com/in/richiekahn/ https://www.canaryadvisorsllc.com/ For help with CBS call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Donate
Episode 29: Neuroscientist Dr. Kat Da Silva Morgan
Aug 17 2024
Episode 29: Neuroscientist Dr. Kat Da Silva Morgan
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 hallucinations, such as Lewy body dementia and psychosis. Dr. Morgan also covers her research findings on brain activity differences in CBS patients, the potential of transcranial direct current stimulation (TDCS) as a treatment, and the challenges of conducting large-scale trials. Finally, she shares insights into the general day-to-day life of a researcher, the importance of educating medical professionals about CBS, and calls for more support and understanding for those affected by the condition.Contact Dr. Kat da Silva Morgan at kat.da-silva-morgan@ncl.ac.uk For help with CBS call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Donate
Episode 28: Cognitive Neuroscientist Dr. Jennifer K Steeves
Aug 3 2024
Episode 28: Cognitive Neuroscientist Dr. Jennifer K Steeves
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 like Transcranial Magnetic Stimulation (TMS) that show promise in treating visual hallucinations. Dr. Steeves elaborates on the complexities of brain function, the importance of individualized medical treatments, and explores the role of other sensory systems in compensatory vision loss. The discussion deepens into emerging medical treatments, including possible natural and holistic therapies, raising awareness about CBS within medical communities and highlighting the ongoing research to improve the quality of life for those affected.Contact Dr. Steeves at steeves@yorku.ca For help with CBS call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Donate
Episode 27: Dr. Anica Zeyen’s Charles Bonnet Syndrome and Research
Jul 20 2024
Episode 27: Dr. Anica Zeyen’s Charles Bonnet Syndrome and Research
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. Zeyen's extensive research on disability inclusion, her work in making public spaces more accessible, and her advocacy for disability rights across various countries. Despite dealing with nearly continuous hallucinations, Dr. Zeyen has made significant strides in academia and activism. She also discusses the challenges and benefits of using a white cane and a guide dog, her personal experiences living with a disability in different countries, and the importance of understanding individual needs in creating a more inclusive world. The episode wraps up with details about her blog, Disability Research Diary, where she shares her research and personal experiences.Read Dr Zeyen’s Blog https://drdiary.blog/ Contact Dr. Zeyen Anica.Zeyen@rhul.ac.uk For help with CBS call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Donate
Episode 26: The Blind Life’s Sam Seavey
Jul 6 2024
Episode 26: The Blind Life’s Sam Seavey
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, an invaluable resource where he shares assistive technology and tips for the visually impaired community with over 9 million views and counting. The conversation touches on the importance of accessibility, emotional support, and the transformative potential of AI and other technologies. Sam's work at the Bluegrass Council of the Blind and his contributions through his YouTube channel make him a beacon of inspiration and information in the visually impaired community.Sam’s YouTube channel https://www.youtube.com/@theblindlife Sam’s Website: www.theblindlife.netFor help with CBS call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Donate
Episode 25: Nina Chesworth's Story
Jun 22 2024
Episode 25: Nina Chesworth's Story
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 sometimes frightening hallucinations, and offers coping strategies such as mindfulness, yoga, and acceptance. The episode delves into the importance of support systems, education, and awareness to better manage this condition. Nina also highlights the broader efforts to raise awareness about CBS and shares information about available resources, including support groups and upcoming initiatives.00:00 Introduction and Guest Introduction01:14 Nina's Eye Condition and Surgeries04:11 Experiencing Charles Bonnet Syndrome07:26 Coping with Charles Bonnet Syndrome11:46 Support and Awareness Efforts20:11 Living with Hallucinations31:27 Coping Mechanisms for Stress and Anxiety32:45 Mindfulness Techniques for Hallucinations33:33 Discussing the Film 'Aspectum'37:01 Advice for Those with Charles Bonnet Syndrome39:07 Personal Affirmations and Coping Strategies40:27 Using Assistive Devices with Pride43:32 The Importance of Support Groups46:54 Raising Awareness and Seeking Help51:57 Advice for CaregiversContact Nina at nina@charlesbonnetsyndrome.uk or https://x.com/blind_but_sound For help with Charles Bonnet Syndrome Call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Contribute to this podcast's sustainability Donate
Episode 22: Vicky Hamilton’s Story and Research
May 11 2024
Episode 22: Vicky Hamilton’s Story and Research
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 understanding and awareness of the condition. The podcast explores the historical interpretation of hallucinations and the potential connections between personal experiences and hallucinations. Hamilton's research aims to create a digital and interactive exhibition to simulate CBS visions, fostering empathy and understanding among the general public and the medical community.Contact Vicky at vicky.hamilton@griffithuni.edu.auLearn more about her work at www.cbsvisions.com For help with Charles Bonnet Syndrome call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Contribute to this podcast's sustainability Donate
Episode 21: Low Vision Occupational Therapist Meagan Chapman
Apr 27 2024
Episode 21: Low Vision Occupational Therapist Meagan Chapman
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 specializing in low vision, the impact of CBS on patients' lives, and ways to manage its symptoms. Key to her approach is educating patients about CBS to alleviate fear and isolation, advocating for greater awareness among healthcare professionals, and improving patients' quality of life through tailored therapy sessions.Contact Meagan at mwilson@lowvisionworks.com Contact Low Vision Works http://lowvisionworks.com/ or 941-366-0011For help with Charles Bonnet Syndrome call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Contribute to this podcast's sustainability Donate
Episode 20:  Graphic Novelist Gareth Brookes
Apr 21 2024
Episode 20: Graphic Novelist Gareth Brookes
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 associated with CBS. He describes the nuances of CBS and its impact on people living with the condition and their families. The conversation also covers Brookes' research into comics, his creative process, and the potential of graphic novels in educating about medical conditions.Learn more about Gareth at https://www.gbrookes.com/ Purchase A Thousand Coloured Castles here https://www.amazon.com/Thousand-Coloured-Castles-Graphic-Medicine/dp/0271079274For help with Charles Bonnet Syndrome call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Contribute to this podcast's sustainability Donate
Episode 19: Dr. Jasleen Jolly
Apr 13 2024
Episode 19: Dr. Jasleen Jolly
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 about symptoms to overcome the stigma that might prevent them from coming forward. Additionally, she touches on her motivations for founding Jolly Vision Science and the need for greater inclusion and diversity in the medical field. Dr. Jolly offers practical advice for people with CBS and healthcare professionals aiming to raise awareness and improve patient care for this often misunderstood condition.Visit Dr. Jolly’s website at https://jollyvisionscience.com/ or follow her on X(Formerly Twitter) @JKJolly4For help with Charles Bonnet Syndrome call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Contribute to this podcast's sustainability Donate
Episode 18: Scot Muirden from the Charles Bonnet Syndrome Foundation
Apr 8 2024
Episode 18: Scot Muirden from the Charles Bonnet Syndrome Foundation
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, and strategies for managing symptoms. Additionally, Scot emphasizes the need for more research on CBS, including its causes and potential treatments. The episode also touches on the difficulties faced by caregivers and the importance of self-care and reaching out for support.Contact Scot at scot@charlesbonnetsyndrome.org Visit the Charles Bonnet Syndrome Foundation AU’s website https://www.charlesbonnetsyndrome.org/ For help with Charles Bonnet Syndrome call 704-389-0160 Contact me at cbsyndromepodcast@gmail.com For the link to attend Dr. Gary Cusick’s U.S.-based weekly virtual CBS support group and caregivers support group email Dr. Cusick at garymcusick@icloud.com For the link to attend Pocklington Trust’s UK-based bi-weekly virtual CBS support group email Jonathan at Jonathan.Ward@pocklington.org.uk To register to attend the Canadian based CNIB Monthly CBS support group please use the registration link below or contact Lucia Ricardo at lucia.ricardo@cnib.ca or 1-800-563-2642.CNIB Support Group Registration Contribute to this podcast's sustainability Donate