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Feel like Statins exacerbated and helped get my loved one to point of dementia.

What about Stem Cell, Exosomes or the Symbyx Red Light Helmet ( since they say for PD help) for LBD?

Seroquel just made my dad a bigger fall risk, as his legs became like jelly and too much for him.. He also said hallucinations worse on Seroquel.. Only thing that sometimes helps him sleep is Gabapentin- but the really haven’t been keen about giving him regularly- because of linkage to Dementia.. Aracept / Donepezil made my dad have horrible joint pain, fever like symptoms, anxiety and even made him say he felt like having a seizure- was horrible .. I would think LBD stay away from certain Bladder meds ( Acetylcholine pathways), Statins and Proton Pump inhibitors…

Is there anything for LBD that can help with negativity, apathy and mood issues that ups Dopamine - that IS NATURAL or NOT Carbidopa/ Levidopa (since C/L can cause negative side effects in LBD patients)?

No drug has helped my dad’s hallucinations and illusions

These first hand accounts really resonate. One of best overviews of how it feels to have a loved one w LBD. Doesn’t really seem like enough help, places to turn to, therapies that work or awareness still for LBD.

My mom also thought she had little kids. When tucking her in at bedtime, she would ask,"what about the kids?" I told her I had just checked on them, and they were all sound asleep. ❤Kay 1934-2010 alz. Chet 1928-2018 LBD Mom and Dad RIP

I mostly "see" puppies 😁

Videos like this are so helpful for those of us living with loved ones with LBD. Thank all of you very much!

So it seems use it or lose it seems to be the best advice.

Great post. Especially the symptoms. Most people only live with this heartbreaking disease no longer than 7 years or less. God bless you all.

My brain feels woozy pressure heavy head and sudden lose of feeling myself feel like in a tunnel memory ok and know whats going on but my head has been the big problem tight ess burning ( at first) 18 months ago after jabs ) cant go out much head is wierd heavy strange

Wow you seem so good

Am so different quite normal in everything but my head is nearly always pressure sort of headaches heavy head always woozy on standing and nothing feels the same depressed .like am in fog worse in car or outside keep wondering if its a brain problem ( with the brain pressure ) dont know where to go .conversation normal cant do anything much because the way my head feels

It takes 10-20 seconds for some people with different types of dementia time to process. It seems like the longest 10-20 seconds.

These accounts almost feel like a description of my mum's as-yet undiagnosed condition. Pressing for a diagnosis ASAP.

I'm just watching this, on Thanksgiving, for obvious reasons. There are questions, more than answers, Neurologist moved. Things are happening so fast. My husband has an appointment in a couple of weeks with his new neurology team and PD 'and whatever else' will hopefully be eventually fully diagnosed so I can help him best. Thank you for this.

Early diagnosis so important, for early treatment. Better quality of life!

I thank you so much for these videos. I had long felt that my mother's undiagnosed condition resembled Dementia with Lewy Bodies but we are still waiting for a diagnosis (she is undiagnosed because her condition prevents her getting to a psychiatrist's appointment to be diagnosed- classic catch 22). However, your video blew me away because her first mental symptoms coincided with her developing a runny nose! Although it does not alter her condition, having some idea of what is happening is still oddly soothing.

1:17:59 1:36:46

A chronic runny nose is related to Lewy Bodies?

I see bugs on me and feel them in me ! I was recently diagnosed with Lewy!

Once a fortnight My husband has a companion come and take him out for a couple of hours I made the mistake of telling him before hand. He was so stressed out, he was saying that he was sick and couldn’t go anywhere. That went on and on for a few hours. He said I didn’t care about him being sick. When the man arrived at the door he was fine to go with him. But I was also so stressed by that time that I just sat and cried for the 2 hours instead of going out. Now I don’t tell him before and he is fine When he arrives I just say-“look who has come to take you out for a walk “ We learn by our mistakes- it’s very hard not discussing things with him, but it’s for his peace of mind Thank you for the advice

Thanks so much for your videos. I am caring for my dad who has LBD. I find your videos and the stories of those who share very inspirational and helpful.

So helpful! I am much older than you but diagnosed with LBD last May. All that you say really hits home. TYVM!!

God bless you all this is hard stuff to handle ❤❤😢

My talks about bunnies all the time

Everyone should be treated like 👍 this

Thank you for your videos. My Mom has Lewy Body Dementia and has shared amazing stories with me of things she has been as if they were normal. Such as, a tiger with black and white wings. He is the leader of the rescue team where she had to serve food to and then her late Uncle Dan came by to tell her the flight is being scheduled soon. He will becoming back for her. Just breaks my heart. She isn't afraid of it either. She is very accepting. I embrace this time either way. Love my Momma something fierce. ❤

Thank you so much for this information. My husband has recently been diagnosed with LBD.

Ted hartley 😢❤

This is the exact information I’ve been looking for. Thank you all very much!

I’m going through all of this right now. Within the last 8 months I have been tested with multiple MRI, MRA, PET scan, EEG, and the 4 hour neurological test. First I was told I had mild Alzheimer Dementia . Now the Neuropsychologist said he thinks it’s Lewy Body Dementia. To me, dementia is dementia…

My mom had a bad fall 18 months ago. She fell back against a door frame and got a concussion and a small brain bleed, and she also broke two vertebrae in her neck. She had emergency surgery and was partially paralyzed , but gradually she got the use of her hands again and some strength in her legs but not enough to be able to walk without assistance. She's also extremely hard of hearing and has glaucoma and has lost vision in her right eye. She was moved to a rehab center, but, after having therapy for a few months, it became obvious that she would not be able to return to our home. At first, when she would start to talk out of her head, we could pretty much guarantee that she had a uti. But over time, she began to have hallucinations, delusions, and delerium without having a uti. It's now reached the point that she has a period of 3-4 days when she's agitated and can't sleep. During this time, she thinks that she sees all the things that have been mentioned here. She also thinks that she's been on trips with some family members who have been deceased for many years. She remembers these visions in great detail, and she remembers them for days or weeks afterwards. These are quite often something awful like a car accident or somebody being after them. After this period of 3 or 4 days, she'll usually have a day when she just crashes and catches up on sleep, and then she'll have a day or two when she is only mildly confused. Then, the cycle starts over again. I try to go along with these to the extent that I can, but other times she's very insistent and tells me to do certain things that I can't do. She gets upset with me when I tell her that so and so isn't here. I considered Lewy Body Dementia, but I heard that LBD came with Parkinson's. She doesn't have Parkinson's. Is there another type of dementia that acts like LBD but isn't, or can a person have LBD and NOT get Parkinson's?

My mother is going through this right now. This is very difficult for the family. Thank you for this video.

I was a sign language interpreter too and wake myself up signing. My mom had LBD and she died in late 2017. I’m recognizing the symptoms in myself.

I am wondering, for most of these folks...how long can they live a life without serious problems and life expectancy.

My husband had Lewis Body Dementia and this has been by far the most helpful to me in processing what he had and all his symptoms/behaviors. Thank you so much for all who shared experiences and the Doctors who spoke! 😊

Thanks for the information. Could dementia run in families particularly ones offsprings .

Norman you hit the nail on the head with people dropping the shoulder and saying I'm sorry esp if you are holding your Reborn emotional support doll lol then it's like you poor thing! 🤪

I love the twilight zone reference..my hubby and I love that show. At times I feel I'm in it too.

Listening to what the early symptoms are, I’m really afraid I might be in the early stages of. Just turned 65. I fall, I lose my balance, I trip, I’m exhausted after even a simple shopping day. Just interacting with people exhausts me.

Yes, my dad had children sights at first and now he is scared to death by something he can't tell me beacause he's speech is gone. Sad that that this is so common disease.

My sleep problems started about a decade before my lewy body symptoms really kicked in. Insomnia was what started then it progressed to restless legs which went from bad to worse.It was off the charts!! Then the horrible dreams started of my grandaughter being attacked somewhere in the dark 🌑 she was crying for me and i couldn't find her 😢😢 thankfully only a couple intense dreams so far. Sometimes I act out knitting or talking. Runny nose started several years ago when Parkinson's symptoms started. Nobody ever tells you the small symptoms are connected to this disease. I am on 59 and hope to live through my 60's 😊

Thank you so much to each and everyone of you involved in the making of this video. I have learned so much.

Thanks to everyone for sharing. Everyone's comments help us to know we are not the only ones going through this.

All disease is all demonic. I am an enemy of this delibrrate attack on God's benevolence. I stroll thru the Garden of Eden by choice, & enjoy the foods He has freely given us for our healing & enjoyment. Dr William Li is a blessed messenger of alternative health, wished I had found him earlier

Thank you so much for including the interviews of people living with LBD.

WHAT A NIGHT MARE SEVER PARKENSONS DEMENTIA AND SEVER LEWEY BODY. WISH IDA KNOWN WHAT I DO NOW WHEN MY PARTNER WAS GOING THRUIT. HALUTIONATIONS. ECT. 5 years of 24x7 caretaker. When he got on hospice it was a good send

What I’ve been gauging through all of these videos is that where nothing can be done in dictating how this progresses, longevity seems linked to managing anxiety/depression, diet and exercise, and a good support system/social involvement.