The Lewy Body Society, established in June 2006 in the UK, was the fist charity in Europe exclusively concerned with Lewy body dementia. Our mission is to raise awareness of the disease and to support people affected by it. We produce information materials and you can also access support and information via phone or email. We also fund research to try to improve the diagnosis, treatment and care for Lewy body dementia, and to date have funded £2.2 million in research studies.
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People don't have mass delusions - that's called reality. Britney Spears was sane the people who stalked, abused and profited off her were psychopaths. Sexualising a child, invading privacy, humiliating, abusing, tormenting a mother is very evil and sick. COVID 19 was the definition of psychosis from doctors who couldn't ground themselves in reality. Are we supposed to pretend that COVID 19 madness and social distancing never happened because it's insane behaviour? In the age of technology and all this 100 genders and abortion business, I think it's safe to say imposters are very much real. You can come up with all these delusional terms but male is male, female is female, babies in the womb are living beings, and reality is reality. If you see it, hear it, feel it and it's manifesting it's real. Transgenderism manifests which means it's real, but genders are constant and grounded in biological reality of male and female. We don't have mental privacy in the age of technology this is fact - not delusion. Mental privacy, autonomy, faith are paramount to freedom and authentic life, love and liberty. We have very much been hijacked by something sinister. If you can convince someone to murder their babies in the womb that's hijacking / possession. It's a form of brain washing and imposter syndrom. The labels no longer work for Christians we are very much awake, sober and aware of right, wrong and reality. While your busy imposing your will/ labels/ control onto others your depriving yourself of company and authentic relationships. The devil wants to be in control and he will always be sad and alone looking at his own reflection. How miserable it is to be living in a world with replicas of yourself and only yourself. Aka hell.
I had never heard of this until Robin Williams. It's tragic that he ended his life, and now to learn that he was probably having awful hallucinations/delusions, that makes me feel so badly for him.
I’m a caregiver for my mom. At night she cries and want me to stay with her in her room. I’m exhausted and refuse to sleep in her room. Am I doing the wrong thing?
My mother has Parkinson's disease dementia, late stage. Looking back, she had fairly regular hypnopompic hallucinations along with the REM Sleep behavior disorder for at least a decade prior to diagnosis. Unfortunately, she was put on levodopa/carbidopa that caused delirium, which is what lead to the diagnosis. As well, she was on oxybutynin for her bladder which also conttibuted to acute episodes of delirium, especially while she was simultaneously experiencing a UTI. After diagnosis, she had fairly regular visual hallucinations. Most all of them benign like birds, mice, and the occasional insect. She'd also experience tactile hallucinations where objects that are supposed to feel firm feel soft, like a table leg or her own leg bone. She was always aware that she was hallucinating and never seemed bothered by them. After starting donepezil and memantine they almost completely went away for a couple years, but then crept back again as her disease progressed. Interestingly, when they came back, they were almost exclusively auditory. She would hear restaurant-type noises, radio noises, and lawn mowers and basketball games in the middle of the night, often complaining they would keep her awake. She still had the awareness they weren't real though. Unfortunately, the last 4 months or so, the visual hallucinations are back and she had one episode that really disturbed her where she thought my brother was home and was telling her to wake up then he walked out of the room. She texted him why he was home from work so early and he replied that he was still at work and had been at work all morning. This upset her to the point of needing a anxiolytic to settle her nerves (clonazepam). She also hallucinated herself laying the opposite way in her bed with me supposedly standing over her (she's fully bedbound). I thought that was fascinating as I don't hear a lot of reports of autoscopic hallucinations with LBD/PDD. There's a large beetle that frequently makes an appearance, and she's started seeing other people as well. There's seems to be a pattern where most visual hallucinations are hypnogogic or hypnopompic. That probably ties in with the RBD, which she still has, but she no longer shouts anymore. It's mostly chatter and laughter. She even opens her eyes and blinks and looks around while she's dreaming. It's really amazing to watch. All that said, I'm grateful she still mostly has the presence of mind to know what's real and what's not. I told her to pay attention to any logical inconsistencies to help clue her in and to treat the animals as just benign "visitors" or entities here to check on her. I figure that reenforcing them as nonthreatening now may help in the future when she may have more difficulty determining reality from illusion. She's had no further delirium, delusions, or paranoia since she was taken off the dopaminergics and anticholinergics, but I worry that delusions may be next on the horizon as the cognitive symptoms progress. But, as with all other symptoms, you just manage the best you can using whatever limited options are available. Thanks for posting this webinar and helping spread education and awareness.
I took mom to see her sister and just told her that this lady grew up in your area. And they started talking about people they knew. Mom never told who she was yet the next time my aunt said it was about time she came. Just trying to see what clams her down.
I always believe them and ask questions as to how if affected them. I found my aunt wanted to know why that lady was in the corner. I said well lets go outside and she can come, so we went to the corner. We wanted to fo to a cafe and my aunt said the lady left. I told my aunt she might saw wheresee
I always believe them and ask questions as to how if affected them. I found my aunt wanted to know why that lady was in the corner. I said well lets go outside and she can come, so we went to the corner. We wanted to fo to a cafe and my aunt said the lady left. I told my aunt she might saw wheresee
I always believe them and ask questions as to how if affected them. I found my aunt wanted to know why that lady was in the corner. I said well lets go outside and she can come, so we went to the corner. We wanted to fo to a cafe and my aunt said the lady left. I told my aunt she might saw wheresee
I always believe them and ask questions as to how if affected them. I found my aunt wanted to know why that lady was in the corner. I said well lets go outside and she can come, so we went to the corner. We wanted to fo to a cafe and my aunt said the lady left. I told my aunt she might saw wheresee
I always believe them and ask questions as to how if affected them. I found my aunt wanted to know why that lady was in the corner. I said well lets go outside and she can come, so we went to the corner. We wanted to fo to a cafe and my aunt said the lady left. I told my aunt she might saw wheresee
Everyone says how hard it is to be diagnosed with Lewy Body and I agree. But the problem is that no one wants to be responsible for that type of diagnosis and the weight of it. It seems to happen over lots of progressive illnesses. But that's years of not getting treatment for the issues.
Robin, I want to say thank you for your efforts in continuing learning for Robins disease. I too am going down the same path as he did. but I have one Medical System that's all inter connected by all my Physicians under one roof. But it's not fool proof. I have had to take charge and learn constantly about my disease so as to have a say on what my options were in my care I am glad that I learned to put No Anti Psychotics in my medical chart as an allergy. Many things to learn 🥺
Thanks Susan and Robin, My journey living with Dementia with Lewy Bodies Dementia and Vascular and Parkinsonisam and Ovarian Cancer, I am blessed to have you sharing this about yourself and Robin, I know I have a Diognosis now .That is A terminal illness, like my Cancer. I wish I could speak with you helped by my Daughter who is my Carer.❤🇺🇸🌎🌍🌏❤🇦🇺🇱🇰🙏🦋🦜
My sister had it for 7 years 4 in her house in Ridgefield, CT, with round the clock care., Diapers, etc!, and 3 in the assisted living facility, The Residence in DarienCT.She couldnt walk or talk at the end. She was a vegetable. It's a horror She went blind..
Why did you not examine younger brains? Are you suggesting that DLB is part of ageing? Also you mentioned a lack of microglial activity in deceased brains and the potential causation may be lost during dying and post mortem.
I am a psychologist in USA and work in sexual trauma. I have a patient with Mild Cognitive Impairment, provisional dx: Probable LBD (dx from neurologist)
Professor John O'Brien is so skilled and kind and it is great that work has been carried out on impact upon family carers who are often ignored. Involving family carers can help inform care providers and research.
I have a 71 year older brother, who is suffering from Lewy Bodies Dementia. We are both living in a homeless shelter. On January 6th he's getting an MRI of his brain for a concrete diagnosis, but he displays all the symptoms. His hallucinations consist of demons, which fill 85% of his waking hours. His decline has been rapid. My aunt had Alzheimer's disease and my dad had Parkinson's disease. I've been the one who has basically been his Case Manager. The Social worker from his healthcare plan. Is going to start taking over some of the responsibilities that I have been shouldering. I do a lot of advocacy work for my brother too. My dilemma is this. I have a brother who lives in Georgia, who says horrific things about my brother, who suffers with LBD. I have another brother in the state where we live. Who is verbally abusive and aggressive. I've taken myself out of the equation, because the things they say are so hurtful and I get attacked all the time when I do try to keep my aggressive brother in the loop. My brother with LBD is not aware of everything that is going on behind the scenes. I can getting caught in the middle with my feelings hurt. I wrote an 11 page letter to his Neurologist. About his life from birth to this point in his life. I have just been diagnosed with severe cervical spinal stenosis, spinal stenosis in the lower quadrant of my back, pinched nerves and bulging disc's. I may need to have surgery, but I don't know how to tell him. Without making him feel like I am abandoning him. I have cut off all contact with my brothers. I sent a letter to the aggressive, intrusive one. I end up having to pick up all the pieces and when he's not feeling safe with the provider's. He says everybody's like our brother Darnell. He told me Darnell hurt him really bad. When he called the police on him twice. He showed up here unannounced on Christmas Eve and kept my brother out side for over an hour. I have a therapist and we're going to shut this down because it's undermining everything we're trying to do to help my brother with LBD. I'm going to talk to his Social Worker when she gets back as well. He did give me permission through a release of authorization to speak with her. She can also set up a health care directive in his MyChart record. To block my brothers from getting information that he does not want them to have. He's terrified that he's going to be killed by these demons or that they're going to steal his car. He told me we got to stick together. If anybody else has experienced having surgery done. Also explained to a person with LBD. In a way that they can understand that you will be coming back. Do you have any suggestions on how we can stay connected during this process. Any kind of advice would be greatly appreciated! Thank you so much!!!
My sister had Lewy Body Dementia. She had hallucinations, the first year, and saw little green furry creatures. She suffered with it for 7 years. She couldn't walk or talk, at the end.
They are still mistaking it for Alzheimer’s - my mother hit every symptom - doctor turned around and said she was a woman and animals she saw and music were her macular degeneration 🤬🤬🤬 That’s Dorset for you.
If a person is severely blind, could the hallucinations be auditory instead as my mum has a lot of the symptoms of DLB but lately is still being treated with anti-psychotics! She's fluctuating regularly at the moment, it's very scary for us.
