The Charles Bonnet Syndrome Podcast

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 [email protected]

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

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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 [email protected]

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

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

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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 [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

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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 [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

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 [email protected]

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

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. They discuss the importance of believing and validating the experiences of those with CBS and their caregivers, as well as the urgent need for better awareness and diagnosis procedures within the medical community. The episode also highlights Mary Carmel's Light's efforts to support people with CBS and their families, advocate for a designated billing code for CBS, and educate through support groups, helplines, and community outreach.

For more information about Mary Carmel's Light or help with CBS visit https://marycarmelslight.com/ or call 704-389-0160

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

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 on drawings made by blind individuals at the University of Toronto. The conversation explores how visually impaired people can engage in artistic activities, the stages of drawing development, and the importance of tactile art resources. Selene also highlights the inspirational stories of her students and the importance of raising awareness and educating others about the artistic potential of the visually impaired.

Contact Selene at [email protected]

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

We have been recognized as one of the Top 100 Visually Impaired Podcasts on the web by Feedspot.

See the full list here:

https://podcast.feedspot.com/visually_impaired_podcasts/

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 the dog, and the benefits and challenges of using a guide dog. Melissa also touches on the use of AI in mobility aids, the personalized support Guiding Eyes provides to their graduates, and how interested individuals can take the first steps toward getting a guide dog.

Guiding Eyes for the Blind Contact info:

888-987-2188

[email protected]

Is a Guide Dog Right for Me? https://www.guidingeyes.org/is-a-guide-dog-right-for-me/

Contact Melissa at [email protected]

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

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 condition. Phyllis also speaks about the role of support groups and family and emphasizes the importance of changing environments and staying involved in activities. Her story offers hope and practical advice for others living with CBS.

For help with CBS call 1-704-389-0160

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

The Charles Bonnet Syndrome Podcast Merchandise

https://cbsyndromepodcast.com/merchandise

Donate

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 experiences such as touch, sound, and smell into visual art. They discuss the unique processes behind Eriko's creations, her inspirations from traveling, and the challenges and joys of being a blind artist. Eriko emphasizes the importance of staying connected to the world and being curious, offering encouragement to listeners with visual impairments to explore their own artistic capabilities.

For help with CBS call 1-704-389-0160

Contact me at [email protected]

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 [email protected]

For support or resources for CBS in the U.S., please visit https://marycarmelslight.com or https://www.charlesbonnet.com or email [email protected]

For support or resources for CBS in the UK, please visit https://www.charlesbonnetsyndrome.uk or email [email protected].

For support or resources for CBS in Australia, please visit https://www.charlesbonnetsyndrome.org or email [email protected]

Donate