My husband died less than two years after being diagnosed with LBD. His deteriorating was I quick and no-one ever discussed the condition with us. Everything I learned I had to research for myself. When things started to be obvious it was if a bomb struck . It's the only way I can describe it. Everything that happens with LBD, happened all at the same time. The hardest thing was the fact that he was aware of the things that were happening to him. He would looked his hands and say " I can't do anything" He just couldn't figure out how to do the thing he wanted or needed to do. But with the help of the family we managed to keep him at home and he died peacefully surrounded by family and friends, just as he would have wanted. No more suffering, now safely in the arms of God

My dad has been stolen also! Some days he just sleeps when I am visiting. So I sit there and think about what a wonderful father and honorable man he is. I appreciate those moments, although his caregivers don't understand why I sit there and watch him sleep. I know the day will come when that blessing will be gone and I will wish I could sit and look at him, uninterrupted... Thank you for your video.

My husband had LBD with Parkinson’s for seven years before death: at least after diagnosis. We know now he had symptoms years before. Hallucinations at the beginning were terrible. My husband called the local police a couple times while I was asleep because he saw people behind trees and bushes on our property. Thankfully we live in a small community and they were so kind and understanding. Loss of smell and taste and therefore not wanting to eat another big problem. The paranoia is so very real. He didn’t trust anyone. He has been gone six years now and as much as I loved him and miss him after fifty years of marriage I am so thankful God took him out of his confusion. What hell that sweet, loving, brilliant man went through those last years of his life. Sending prayers for those of you going through this horrible disease and loving caregivers. 🙏💕

My sweet mom had LBD for 16 years starting at age 65-66...she passed away in 2011. It was so sad and tragic. God bless you and your dad.

That was my MIL to a T. We lost her three weeks ago. It was so rapid at the end. The neuro psychiatric symptoms began years ago. And she was so stubborn she refused to be diagnosed, no matter what my FIL tried. And the delusions. The anger. When it got really bad at the end, the doctors put it together for them, but she almost immediately went on hospice at that point. She had been shuffling everywhere, all that you describe. I’m so very sorry. And we think the same thing about my MIl. Of the 28 years I’ve been married, I had a wonderful mother in law and close friend for around 23, and that’s how I think of her. With love to you and prayers ♥️🙏🏻

My dear lady friend was sliding quickly into grumbling communication, in the senior's home. I held her hand, and she squeezed my hand. I knew she was still there, inside her body. In short, in one night, she came to me in my dream. She showed me her arms, her skin was like porcelain with a gray undertone. I woke up immediately and phoned the senior's home. They told me she had passed away four day prior. No one else would have told me this news. She was always there, in her heart and I knew that. I felt simply honoured to be contacted by her of her passing. Love you Pearl.

I’ve been in the hospital for 4 days with my grandmother, watching the saddest thing i’ve ever seen😭 we are pretty sure it’s LBD/parkinsons. I thank God for videos like this to help me understand more during all this.💔 thank you

He is indeed first and forever your dad and what an incredible daughter he has in you. My heart goes out to you and all others who have to face the cruel consequences of LBD.

My mother passed away from Lewy Body Dementia. She wasn't diagnosed until 6 months before she died. The stories I could tell... when she fell and broke her hip seems like she really went downhill very fast. She thought 2 men lived in her attic and had a computer that when pushed a button bad things happened. Another was she seen little kids playing that weren't there. So many more. Thank you for sharing your story. So sad this happens. Last time I had my mom visit me she was adamant that I was trying to poison her so she wouldn't eat or drink anything. I had to take her home. Before she was bedridden she eventually couldn't hold her head up. Had to strap her head to wheelchair to feed her. She pretty much starved to death. Last day before coma she had one tablespoon of baby food. That's it. Well won't go on and on but there is so much more. Thank you again for sharing a part of your life with us.

My Father in Law is 80 years old and currently in The Veteran's Administration Hospital for evaluation - they are leaning towards a diagnosis of LBD. Interestingly, we hadn't noticed any alarming decline until very soon after he received his Covid vaccine - that is when his extreme insomnia began. He struggled with that and extreme agitation for about 6 months and then had shoulder surgery which seemed to make his condition even worse (I have read of others who feel exposure to anesthesia often is a trigger or worsens such conditions). His condition has deteriorated rapidly over the last 3 months or so, often involving wild mood swings from day to day or even within the same day. He now suffers at times from delusions, paranoia, occasional hallucinations and has begun threatening care givers during bad episodes. Hoping the physicians can hit upon an effective medication regimen which will improve things without too many negative side effects. Thank You for sharing your and your Father's experiences in this video.

Thank you for doing this work. It has been not only informational but also a great tribute to your love for your father.

My father died last year of vascular dementia at age 95. The father I knew growing up was a different, more competent man than my father at the end of his life.

My husband has been living with LBD for the last 5 yrs. and this video has been so similar to what he has been going through. He has been sliding into later stage for the last year and it’s has been quite comforting to watch this.

My mother suffers from dementia and until just yesterday, I had no idea that it is so likely to be Lewy Body... it was an eye-opener to start watching videos about this form of dementia and in some ways a relief to know more specifically what it is (most likely). I too question - who is this person? Are we still a person if we don't have memories? Good question. I think about this a lot as I look after my poor old mother with the same advanced stage dementia as the man suffers with in the last few minutes of the video. When I see her trying so hard to find a word, help with a small easy chore, make her way onto the toilet seat with so much difficulty etc. I see a human being who is struggling and fighting to prove herself as a worthwhile, functioning and valid being and the great compassion I feel tells me that she is really more human and valid thank when life was easy..

Thank you so much for the ìnformation, I watched the video, put it on pause, rewound it, and replay it so many times, because my English is not so well. I am on my way to visit my oldest brother in France from USA next month. I found out he had just started to have dementia. Now, I understand the future of my brother. and I am more prepared. All I can do right now is accept and pray to God. I wish you well and may God Bless all of your loved ones. Goodbye.

My brother passed away from Lewy’s body last year. What a horrific disease. I am still in shock how quickly he deteriorated the last 6 months of his life. His hallucinations, his dementia. His wife had to brush his teeth and help him to do the simplest things. What a dreadful way to go. The day he died my sister-in-law came downstairs and he was nowhere to be found. She found him wondering around the neighborhood “looking for my house”. My brother was a vibrant man, always on the go. Breaks my heart and miss him. My brother was only 72.

I am a caregiver for people with dementia. I appreciate your video. It helps families understand a bit more about the disease.

Your descriptions and explanations are spot on. My husband passed away from LBD in 2014. He was 62. His symptoms began in his mid forties. He was misdiagnosed for 8 years. I was blessed to be able to stay home with him as his caregiver until the end. Hospice helped me his last 6 months.

God bless all of you, my heart goes out to you. I am singing Mi Shebeirach - Prayer for Healing for you all.

I’m so sorry you and your dad have to go through this disease. I look forward to the day in the future when no one will be sick Isaiah 33:25 and no one will be in pain or die Revelation 21:3,4 We need God’s kingdom which is the only solution to all our problems. Please take care.

Wow, great video. This is the reality of LBD. I’m going thru this with my older sister. She calls me multiple times a day every day with one crisis after another and wants me to come over to her assisted living facility. She’s a hoarder, very paranoid, thinks people are stealing from her and trying to poison her. Loses things constantly. Some days I don’t know how I can keep doing this. Thank god she can afford assisted living. It’s very stressful for the caregiver. Thanks for sharing your journey!

Wow. I needed this. My mom was just diagnosed with LBD and you have no idea how this helped me to listen to this. It has been a nightmare and I can relate to every single thing you said and showed. God bless you and your father and thank you for sharing this.

My wife and I both worked in health care until our retirements. We both worked with Alzheimers patients and those with other forms of dementia. My wife retired 5 years before me, to care for her mother, who had Alzheimers Syndrome. Mom's doctor refused to listen to us when we told her about Mom's symptoms of paranoia and memory loss, and inability to clean house, because Mom would deny it and the MD did not do any cognitive tests. After we moved Mom out of her home, to ours, we got our MD to take her as a patient, and the correct diagnosis was then made. She lived with us until her death here at home with us by her side one morning, quite suddenly and unexpected. She needed assistance with cares, constant encouragement to take a bite, to chew and to swallow. She never became combative, but she could be extremely argumentative at times. We are grateful that we had training and experience with Alzheimers, but it can really be wearing on the main caregiver. We had Mom in a twice weekly daycare, so that my wife could get a break. Now, 10 years later, I am seeing the early signs of dementia in my wife, who is 5 years younger than me. As a retired nurse, at least I am not unaware of what is happening, and how to deal with it. Bless all those folks who are caregivers for their aging and demented parents or spouses - you are all secret angels.

Thank you for sharing. I’m suffering with the same condition and am somewhere around Phase 3-4. My heart goes out to you and am very happy he has such a supportive daughter. I’m very concerned for what my kids will go through caring for me as this progresses.

My mom is in late stage Alzheimer’s. She is home and hospice is with us for support. I left my job to care for mom during this time. It’s a cruel and unforgiving disease. I love you Mom ❤️ TY for sharing this video and your expertise. It helps.

I found this video of your Dad so interesting.I feel privileged to be able to listen to your video.

This was a very helpful video, thank you for sharing your story. I’ve been caring for my mother who’s 65 years old, she was misdiagnosed with altimeters 4 years ago and was recently diagnosed with LEWY body dementia in January 2023. Altimeters never made sense to us because it originally presented as a movement disorder with delusions, mood changes and hallucinations. She’s had symptoms for about 7-8 years now and I’ve been fortunate to be able to live with and care for her. Thank you for spreading awareness about this disease.

Just breaks my heart what people have to go through before finally dying….we should all be able to cut the cord when this happens. Once you are far along with dementia you can no longer do anything. We should be allowed to make a living will that we can be euthanized before it gets to this. I am 80 this year and fear this for my family. I would hate it for them to have to go through something like this and also for me to be afflicted and live in fear or disbelief until the end…..thank you for making this video and explaining every step of this awful disease or condition…..may this wonderful man finally rest in peace….

Well done and very informative. My brother has LBD and was misdiagnosed with Alzheimer’s from 2016-23. He was recently diagnosed with LBD when he was admitted to a care center. He is only 67. His case seems rather severe as he has extreme anger and anxiety. The disease has taken away my sweet brother.

until I found your channel as well as others...I would not have known about Dementia/Alheizmer etc. I couldn't get my darling husband to see a Specialist...He showed Parkinson motor and non motor signs for about 20 yrs. I was resentful and sometimes frustrated and thought he had no common sense ...and all the host of other symptoms...I am ashamed and asked for his forgiveness each time...He has been diagnosed after rushing him to emergency...my heart goes out to my husband...a very brilliant Scientist...He denies he is ill and it's ok...He is now in a Care center...I see him daily so we can have beautiful moments still...He was fearful, I would leave him...I assured him...I would not! He is grateful...he still remembers me but no other family or colleagues and friends...I will forever love him!!! Before Dementia and all other illness under that umbrella...I heard but never knew...I pray, he will NOT Suffer till the end...He is such a beautiful HUMAN...

I wish I had see this video four years ago. Our late mother was suffering with dementia.....it took four of us to care for her that we didn't have to put her in a facility. She passed away in her own bedroom surrounded by her things, and her loved ones. Obviously, you have done an excellent job sharing this information, but I would like to contribute one thing.... As moms situation worsened....we found out that CBD oil was helpful (we live in California), we checked with her treating physician, and he agreed it could be helpful.....it was. If you live in a state where CBD is legal, you may wish to speak with your loved ones treating physician in regards to that "medication", and find out if it could be beneficial to your loved one.

This video was so well done and will help many people dealing with this disease. Thank you.

what a wonderfully kind person you are for making this video. my mother in law was diagnosed with mild cognitive decline (MCD) and it has been one of the most difficult, soul-ripping diseases I have had to experience. I struggle all the time about how to best support my wife in how to best support her mom, but I feel like I just fail all the time. Again, what a wonderfully kind person you are, for helping me to understand it all.

Thank you for sharing your journey. I had to fight the system so hard to finally get my dad diagnosed with his frontal temporal lobe with Lewy Body dementia . He passed in 1999 . It was a rollercoaster of a journey for us all . The Rare Dementia Support group based in UK has excellent information available on line and they also hold conferences too. They are a very good resource to be aware of. Sending love to all of you travelling this journey. Be gentle with yourselves. Take one day at a time. Reach out for support . 💜

Thank you so much for sharing this journey. This described my dad so perfectly. sadly he passed on August 18th 2020 and due to covid, we could not be with him. He was in a lovely care home and although it was difficult to see such a strong competent man decline we just rolled with it .one day we visited he told us that they (the staff) would not allow him breakfast and he was upset and said I'm going get me out of here. when we spoke to staff they told us that dad would come for breakfast at 6 am as a lifelong early riser he was hungry. The kitchen staff would give him as much toast he could eat with a pot of tea as it was too early for a cooked breakfast, dad would then go back to bed for an hour and then show up at 7 am for breakfast again he was served toast and tea .8am again dad shows up I want the porridge to which he was given porridge tea and toast 9 am again he turns up and is served cooked breakfast. He was upset that he couldn't get his cooked breakfast at 6 am and this was the part that he remembers.so sad but the staff were so good to him and really cared so much 💔

My dad had a stroke in 2017 and seemed to begin The symptoms of LBD. He has Seizures/hallucinations/anxiety/suspicion/anger/mischievous. I have been with him taking care of him since his stroke. I just called in hospice for him because he has really turned to a distant place. And it’s just too hard to try to get him to doctors anymore. I’m blessed the Lord has made a way for me to be able to care for my dad, as he cared for me in my life. My heart goes out to all the caregivers out there. No one really knows how much strength it takes to be you. May the Lord bless you all❤

Incredible. Thank you so much for sharing with us. You are a wise and caring woman. Your dad is so lucky to have you.

I’m so very sorry. This horrible disease took my daddy in 2014. You are in my prayers. ♥️🤠🙏

Thank you for the video. It highlights what so many go through but those who suffer from it and their family. My dad has Alzheimer’s and vascular dementia. He lost his ability to speak quite early. Before then he would horde keys as people were breaking in and stealing them. He’d even take vehicle keys in and get them copied. When he finally moved into a care home we found hidden keys all over his basement and garage workshops. Also lots of tape measures. So many tape measures. He was a brilliant mechanic (and great hobbyist woodworker) and could just look at something and figure out how it worked. Among other mechanics in town, he had a reputation of being able to fix the things others couldn’t. But as his disease progressed he couldn’t even figure out how to set up the awning on the trailer. Strangely, he wouldn’t remember a simple fix but was ingenious at finding the complicated “fix”. Eg He flicked a switch to turn the trailer water pump on, but then forgot the switch existed. To turn off the pump, he emptied the storage crawl space, crawled in, located the water pump wires, and cut them. My mom would come home and find several things in the house “fixed” in a similar destructive manner, often done through the basement wiring or plumbing. He’s in a wheelchair now. Mostly just stares into space or sleeps. He can still feed himself and has a healthy appetite. He’s 82 now, and likely won’t make it to 83 which is good because who he was is long gone. Not even the child-like person he became remains. But I have many of his woodworking creations. A table, cabinets, magazine racks, wooden games and toys, bird feeder, and many of his old tools that I take pride in using when I’m fixing things. I have newer tools but if my dad’s old tool works, I’ll use that. It makes me feel connected to him…and rather aptly some of the tools are ones his dad used so I like knowing I’m using the same tools my granddad and my father used. I don’t think I’ll grieve when his body dies because who he was died a while ago. I’ve done lots of grieving already for him, and now I get comfort in the things and lessons he left behind. I’ll be visiting him tomorrow with family but he will just stare into space so we’ll (mom, brother, me) recount good memories of his time with us. Maybe locked somewhere inside is a part of him who will understand us and recognize what his life meant to us, and he will feel at peace.

Thank you a million times. My husband and I moved in with my mother 4 years ago . She has Lewy body dementia and it is the most insane and heartbreaking thing I’ve ever seen. You are right that my mother is no longer there save a few lucid moments. She was the most logical human I’ve ever known and not being able to reason with her has been the hardest struggle. The hallucinations are mostly terrible as well as the delusions. I love what you said at the end- it’s the disease- not my mother and I hold dear the lifetime of memories I have of her being her.

You did a lovely job compiling this video. I noticed three years ago that my husband had dementia and balance issues. It took another 2-1/2 years to get a diagnosis of Dementia with Lew Bodies with Parkinsonism. It is so frustrating for loved ones who want to help, and do not get any help from the medical field. I learned a lot of what you mentioned in your video from support groups. And yet there is so much more to this disease that is still unknown. I wish you the best on the journey with your father.

Your video has given my husband and I better understanding of this dementia. His mother passed away a few weeks ago from this horrible disease. The different stages you describe are exactly the ones she exhibited. My mother-in-law was a nurse and extremely intelligent making this almost unbelievable to us. She went through every stage you covered in this video. She passed away just 3 months after diagnosis. I was very concerned about my husband's almost stoic reaction to her death. He in my mind was not not grieving as deeply as I thought he would be at her sudden death. When out of concern I asked him about his grief he quietly told me that he had been grieving for 3 months. He said “my mother died 3 months ago”.

Thank you for your video. My mom was bipolar, which later in her life had a medication reaction which brought on Lewy body and Parkinsonism (the specialist did nuclear brain scans and many other tests for the diagnosis) with practically over night body function shutdowns. Hers was bad, bad, bad. My heart broke and shattered so many times, especially getting a call in the middle of the night from nursing that my mom called 911 because someone was coming through the window to kill her. I won’t say who, but it was a family member she was frightened of. I’d talk her down from the ether for many hours, more than I can tell you all the while having my dad here living with me having vascular dementia. I was alone, no support or help and ran on no sleep for several years. There wasn’t help offered, not any to get. Anyhow, your video was interesting and I’m so happy your dad doesn’t have the really scary bad moments that some have. It’s so hard on them and us.

Thank you for your last comment...he is not his disease. Your video was like watching my own Dad, still trying to figure out how to best help him...thanks.

Thank you so much for sharing. I particularly love the way you ended this… most important perspective in the grand scheme of things. Again, thank you.

So sorry you are going through this with your dad. My grandmother had Parkinson's induced Alzheimer's. She passed away many years ago. It's horrible to see someone you love in the throes of this disease. Thank you for sharing. I try to just remember the good old days, too.

Thanks for the video! My dad, who died of vascular dementia, had 10 flip phones. He stopped doing things he ALWAYS DID like picking his teeth with tooth pics. He started sleeping in his clothes. He forgot how to turn off the lights with the wall switch and would instead unscrew the bulbs, even the ones on the ceiling. This last one really got me! He was somehow smart enough to hide the ladder so I kept replacing light bulbs & and wondering why they were blowing out so fast! I could go on and on! He had so many lucid moments I would get confused. Many people thought he didn't have dementia....because of the lucid moments. I say dementia is catching because I had to mirror or go along with his crazy beliefs, because he was my dad and always such a dominant personality. If your family member is suspected of having dementia? Do your best to get the diagnosis ASAP. Has anyone had trouble getting the dementia diagnosis for a family member? It took me 9 months to get the diagnosis.

"He is not his disease." Important to remember. Thank you for this video.

My father died four years ago with Parkinson’s and LBD. I do not think he forgot anything until the very end, he just couldn’t recall when he wanted to. I believe he was able to comprehend more than he was given credit for at times but many thoughts were lost between his brain and his mouth. Also, he was partially deaf so he was attempting to hear and comprehend simultaneously. His quality of life changed but was not lost. He never lost his love of music, the outdoors, the great grandchildren, and the pets. Once we went for a walk in the woods on the farm where he was raised and we had hunted. His whole demeanor changed, his gait changed. This was a serious activity for him. At times he could explain different aspects of music to me that I didn’t understand. He was able to recite a specific Bible verse he learned in school as a boy, but at times not recall my name. He still enjoyed eating at places like IHOPE and Waffle House, where the patrons are more likely to overlook suspensions in dining etiquette. We had to plan our outings, take a change of everything. Dementia is an awful disease but it is not the end of the world. The more family there is to help the better, and friends. If the afflicted becomes mean and hard to live with steps must be taken to deal with that. But that wasn’t our experience. We must deal with life the best we can. We take it as it comes and helping out a loved one for a little while isn’t too much to ask.

Your vlog has helped me more than any other. My father is 95 years old and is in the same stage as your father. It is challenging for the caregiver and distressing for the person suffering from it. There is no rationality to what my father is going through. He has days where he is very angry and accusatory with me. His world only involves him now with no concept of the needs of others. I am his sole caregiver and I can say that I am lucky to have a very supportive husband although my husband doesn't really fully understand my father's condition. He still thinks that because my father is able to hold a conversation, although the conversation is full of delusions, that he is still able to understand and comprehend concepts. I have to continually remind him that my father doesn't have the ability to comprehend simple things anymore. My father will argue that things haven't been done when they in fact have and when I ask him to come and see that they have been done, he still tries to say that they haven't been done. He has no appreciation, no gratitude, no happiness in his life and everyday is a day that I have to be stronger than I have ever been in order to deal with him. Thank you so much for making this vlog, it is greatly appreciated.

Thank you for sharing. This was fascinating and very well done. Blessings to you and your Dad.

I live with someone with Louy dementia. She is the nicest person but when she has a delusion her personality totally changes. I appreciate your work in compiling all this information. I will share this video with others. I can't stress enough to be kind to yourself. And use your pain to be stronger for your dad. God's peace.

Thank You for sharing your story.It helps for people to get a better understanding of this disease. I'm so sorry for your pain.

Thank you for posting this excellent video. My grandma had Alzheimer’s, and my father’s doctor doesn’t believe me when I tell him that this disease is so very different from what my grandma had. My dad has a lot of autonomic nervous system dysfunction, the Parkinsonian rigidity, and the cognitive fluctuations. The caregiver fatigue is suffocating at times. I look forward to more videos if you feel so inclined to share.

You are so right....your father is not his disease! How wonderful that you have lovely memories of your father! Thanks for sharing.

I am sorry for your pain and I thank you for this video. Sending good thoughts your way.

Thank you so much for sharing your story. This is the journey I am on right now with my Dad, and this video was very helpful ❤🙏

God bless everyone that’s living with this disease and the families who are heartbroken helping their loved ones through it. I always wonder when the last time I actually saw my mom aside from her disease. Just like this video says, like they were taken from you over night. This video along with all the comments, do give a true description of what it’s like. My mom was diagnosed with Corticobasal Syndrome, with an overlap of LBD. She’s in her 60s and it’s taking her so fast. For what we see in her it’s a cross between Dementia and Schizophrenia with her major symptom being Aphasia. More attention needs to be focused on these neurological diseases in order to find something to slow it down, and maybe one day cure. Thank you for sharing your journey. God bless your Dad, he’s a strong man for enduring this disease. Prayers to you and your family 🙏🏻

Thank you so much for making this video and passing on this information. My aunt had LBD and passed away last year. The disease progressed in the way you described.

That is an excellent video. It is so sad 😞 anyone has to go threw such a terrible illness. From Wisconsin, take care, you did such a great job explaining it.

Mom was diagnosed as early onset at age 95 with LBD. She lives with me and we now have hospice coming in several times a week. The other day I didn't know if it was a UTI or another hallucination. The roller coaster ride breaks my heart but I keep a brave face for her even if she doesn't know who I am at times. The most heartbreaking part was her depression when she realized something was wrong

Thank you for sharing this personal story. The last sentence is, for me, very important. In my previous work I have creating teachings for clinical staff to remember the ‘person inside the patient’. I’m so glad that you try to honor him in this way.💕

Thank you for sharing. My husband is 84 and has some dementia. The way you explain what is happening with your Dad will help me a lot. Praying for you guys

Thank you for sharing this. Very helpful. May God bless you all during this very difficult time 💖

Thanks for the video. It helps to see how he presents.

I'm so sorry this is happening to you and your family. For what good it may do, you and your father are in my prayers.

Currently going through this with my father in law- he’s skipped straight through to stage 6 in about 10 weeks :( the hospital treatment is awful and we’re still fighting to get him moved to somewhere secure. Thank you for this

Thanks so much for sharing with us your father's experiences with LBD, and your own story related to that. There's so much I can relate to. My father officially had a Parkinsons diagnosis, but it bothers me to this day that it was almost certainly not a fully accurate diagnosis. I saw how rapidly his cognition declined (he'd been very highly intelligent, so the shock of seeing this was hard to digest) and after doing some research, I felt very sure that he actually had LBD. No treatment he had ever received seemed to benefit him and I'll always wonder if this was why.

What an honest video this is, showing such love for your father. It is such an awful disease. Sufferers need as much support and love as possible. It could happen to anyone and no one asks for it. Thank you for educating me on LB dementia.

Thank you this is so much more helpful than you know! My step father was just diagnosed with LBD last month (after a year of navigating the wonderful medical system we have in the US) and we estimate him to be in stage 5. He has gone from not being able to remember how to get home and losing his job as a truck driver to tremors, hallucinations, and a severe cognitive decline in the span of 8 months. It's good to hear your persepctive. Thank you for sharing.

Thank you for this fantastic clip. What you have described is exactly what so many of us have seen with our loved one with LBD. Your calm descriptions, documented evidence and explanations are very helpful.

@PhyllisBrodsky I am so saddened to see what your Dad went through; you are an Angel for all you did and especially sharing such a personal story. God Bless You and your family and May God watch over your Dad… 🙏🏼

Thank you for sharing. I am going through this with my Mom and finding such comfort that others are having similar experiences.

Very thoughtful video. Thank you so much for sharing your experience with your dad.

Thank for sharing your family’s story

Thank you sooo much for this. ❤ seriously you are brave for sharing this. This helps others to better understand a tough situation. I know it helped me.

Thank you for this video from a daughter's perspective. My dad had his first hallucination about 20 years ago (that was his only symptom for about 12 years and they were rare)...he was not officially diagnosed until 6 years ago. The part where your dad is playing the piano and he says a nonsensical question and then you answer him so quickly trying to appease him. I do this with my dad all the time. Trying to figure out what answer he wants or what to say back sometimes is very challenging. My dad knows me but does not always understand my role in his life. He knows I am "one of the most important ones" so really that is all that matters! It has been so hard to watch him dissolve away! God bless you and your dad!

Thank you for sharing. My sister, 73, has just been diagnosed with LBD, a month ago. This is really hard and your information helps me understand this disease.

Thank you so much for helping make sense of such a horrible disease. As a fellow family member, you feel stuck on the side-lines, not knowing what to expect next or what is the new normal each day.

This is a very educational video, and very hard to watch at the same time ; Hard to see your hero going through such changes in life and can’t do much about it smh . Thank you for sharing with us ♥️🙏🏾

Fantastic chronicle of lived experience. Tremendously valuable share❤❤❤❤❤

My dad’s journey started 9 yrs ago after he suffered a heart attack and had to have a quintuple bypass. During the first year following his surgery, he began shuffling his feet. A year afterward they mentioned it to the cardiologist who referred him to a neurologist and he was diagnosed with Parkinsonism. Similar to others here, my dad was an electrical engineer until his forties when he left that career and went into the ministry. He pastored for almost 3 decades until he retired 4 years ago and since then he has declined so rapidly. His mobility is almost nonexistent. He has to use a rollator to walk but that is becoming difficult too. He has had hallucinations for a few years. My mom recently ran across LBD and thinks he has it as well, but it’s symptoms mirror Parkinsonism so much. One thing he has been experiencing lately that I’ve not read linked to either is that he starts his day good, but his condition worsens as it gets evening time and now when he stands to move from his lift chair to his rollator (my mom rolls him to bed) he has been having blackout seizure type episodes. Smelling salts or just comforting him until it passes is all we can do. We have checked his blood pressure during those episodes and it’s normal. He has an appointment with his neurologist in a few weeks and it has also been mentioned to his home health nurse, so hopefully we’ll have answers soon. Just sad to hear so many enduring this terrible disease with loved ones. Prayers for each of you.

My heart goes out to you my dad had Lewy body his hallucinations towards the end were horrific. I wish I had had something like this video back then to refer to seeing your dad reminds me so much of mine.

Absolute great video! Thank you so much for sharing. It is clear, simple, to-the-point and very informative and practical. I've been an Occupational Therapist for over 15 years and everything seems accurate.

Thank you for sharing this information and your story. As a RN with a cardio/thoracic surgical step down back ground the doctor just assumed I understood what he was saying. First off my specialty was heart and lungs and secondly as a daughter I am not necessarily thinking like a nurse and that was frustrating. I am fortunate in that as a RN I am able to find the info I needed and that I know how to advocate for what is needed.

This is incredibly helpful, thank you. My Mum has both vascular dementia & Alzheimers, she “sundowns” which was very weird at first, she’d phone me & we’d have a lovely phone chat, then she’ll immediately call my sister & call me horrible names! We have family code when she’s being angry, we just look at each other & say, “That’s not my Mum.” Thank you so much.

This clip was a great tutorial for me. Thank you for this.

This is so very interesting. Thank you

This just popped up on my feed and I was thankful for it. My husband has PD with LBD. He is sharing many of the same symptoms as your dad. I have subscribed and will be interested in seeing his progression if you care to share. My husband is in Stage 5 Parkinson's, and about Stage 4 LBD, I think. Bless you and thank you for sharing. Very helpful!

My Dad exactly this. So sad and so hard. Video was helpful thank you

Thank you for sharing. This is one of the best videos I have seen on this subject. My mother had what we believe to be LBD, although no doctor said that until a couple of months before she passed. We had lots of paranoid delusions and were told she had major depression with paranoid features. She has been gone 2 years now and I am still waiting on the pathology report from the brain bank to verify LBD. The delay is still due to COVID. Prayers for you and your dad. It is so hard. We are in Tucson too. ❤

Thank you for sharing your experience.

Excellent video!

Your father is very present within you. He is still here, and the world still knows him, just in a different form - through you.

Thank you for your video. I am just now learning about LBD. My Father is almost 91 and he is changing so quickly now that I wanted to get some kind of idea of what is to come. He hallucinates and has become combative at times and that is a shock to me because it's not my Father. Thank you for the information. It's very helpful.

This was amazing! You did such a good job. I

Thank you!! …thank you… your father would be proud… you have helped me so very much….I know you will touch & help many more….

Amazing documentation of such a cruel disease ❤❤❤

Thank you for sharing your journey of heartbreak withh us Having lived with a person diagnosed with Paranoid Schizophrenia I have noticed similarities in behavior. I wish you and your family strength for whatever lies ahead. It takes a lot of patience and )ove and understanding to have to deal with a situation like this.🙏💝

Thank you. That is my dad. But they still know who we are and trust us. That is so comforting right now. The rivastigmine patch helps my dad a lot ... All the best Julia