I want to know how fast the disease gets worse in mentally healthy patients. Is it possible that they develop psychosis because of the disease? Should I move with them, or is it safe for them to live on their own?
My mother has Charles Bonnet syndrome. It is the result of losing vision late in life. Mom lost her vision due to macular degeneration. It is not a mental illness or dementia and does not cause psychosis or dementia. Vision -can progress to complete blindness. Regular care by a retinal specialist is essential. My mom takes gabapentin daily. This helps with the frequency and intensity of the visual hallucinations. Her specialist also recommended sitting in direct sunlight half an hour a day and she takes prescription vitamin D. It is more concentrated than OTC vitamin D. My mom went into assisted living with my dad a few weeks ago. They are mid 90’s and both had mobility problems. Mom uses an I Pad with the print set on bold. She also has a high intensity light and a magnifying screen that sits in front of the television. She is still able to read a little with the peripheral vision she has left. TV she watches a couple of programs a week. She stayed with my dad until assisted living and by herself when he went on hunting and fishing trips. She went to Europe with a tour group last year and roomed by herself.
Having taken care of her for many years with several eye doctors, I’ve found having a retinal specialist the best option. We have to travel 3 hours for appointments but well worth the time and expense.
Ask your local library to check which of Oliver Sacks books deals with this. They have access to lists that contain enough detail to work it out. Then borrow it!
Having taken care of her for many years with several eye doctors, I’ve found having a retinal specialist the best option. We have to travel 3 hours for appointments but well worth the time and expense.
https://www.ted.com/talks/oliver_sacks_what_hallucination_reveals_about_our_minds
Try it, he's usually wonderful.