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 shares groundbreaking research from Australia, particularly the work of Vicki Hamilton at Griffith University focused on artistic representations of CBS experiences. Antoinette and Ken Ellis discuss their personal encounters with CBS and how art, music, and environment play roles in the manifestations of CBS. Eva Potts highlights the importance of awareness and the work being done by Mary Carmel's Light to support people with CBS. Additionally, Judith Potts from Esme's Umbrella in the UK provides a recorded message on new research findings, her ongoing projects, and the importance of educating the medical community about CBS. This episode underscores the global effort to raise awareness, the importance of combining art and science, and the crucial role of support groups in improving the quality of life for those living with CBS.

Mary Carmel's Light https://marycarmelslight.com/

Charles Bonnet Syndrome Foundation https://www.charlesbonnetsyndrome.org/

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

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 mistook her hallucinations for supernatural occurrences, leading to her CBS diagnosis. Karen also speaks about the delicate balance of managing her own treatments, medications, and doctor's visits while being a 24/7 caregiver. Additionally, the episode highlights the importance of support groups like Dr. Gary Cusick's weekly CBS group, coping strategies for CBS, and the value of external support systems. Karen's story is one of resilience, highlighting the importance of taking life 'one moment at a time' amidst life's complexities.

Contact Karen at Sy.karen.016@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 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

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 study, and their impact on patient care are also covered. This comprehensive overview aims to enhance understanding of syndromes for patients, caregivers, and curious listeners.

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

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 highlights the importance of patience, support groups, and finding activities that help manage symptoms. Additionally, Jo reflects on the role of family support and shares tips for other caregivers dealing with CBS.

Contact Jo at mrsjhill2@aol.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 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

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 brain's vision centers through wireless implants. The conversation covers the history of the project, its technological advancements, participant recruitment, and the future potential of this groundbreaking research.

Dr. Troyk and his team are actively recruiting participants for this Intracortical Visual Prosthesis (ICVP) project. If you or someone you know are interested in participating, email icvp@iit.edu

For more information about the study, listen to this podcast episode or visit https://chicagolighthouse.org/icvp/

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

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 the Orion Visual Cortical Prosthesis Trial, touching upon the experimental process, patient outcomes, and future prospects in the field. Dr. Pouratian also emphasizes the importance of integrating technology and patient engagement to enhance research and therapeutic solutions. Whether you're interested in cutting-edge medical research or curious about innovative treatments for vision loss, this episode provides valuable insights directly from an expert in the field.

For more on Dr. Pouratian https://www.utsouthwestern.edu/education/medical-school/departments/neurological-surgery/

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

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, Frank discusses the persistence of these hallucinations, the methods he uses to manage them, and his belief that understanding and unwavering faith are key to dealing with CBS. The conversation also highlights the general lack of medical understanding and effective treatment for CBS, emphasizing the importance of education and support for those affected.

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

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, understanding, and support from medical professionals and the community. This episode provides valuable insights and practical advice for caregivers and those affected by CBS.

Contact Bettie at bblack0266@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 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