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Episode 25: Nina Chesworth's Story
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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 Introduction
01:14 Nina's Eye Condition and Surgeries
04:11 Experiencing Charles Bonnet Syndrome
07:26 Coping with Charles Bonnet Syndrome
11:46 Support and Awareness Efforts
20:11 Living with Hallucinations
31:27 Coping Mechanisms for Stress and Anxiety
32:45 Mindfulness Techniques for Hallucinations
33:33 Discussing the Film 'Aspectum'
37:01 Advice for Those with Charles Bonnet Syndrome
39:07 Personal Affirmations and Coping Strategies
40:27 Using Assistive Devices with Pride
43:32 The Importance of Support Groups
46:54 Raising Awareness and Seeking Help
51:57 Advice for Caregivers
Contact 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
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