It's a complicated disease the widow of actor Robin Williams once called "the terrorist inside my husband's brain." It's affected more than one million people.
Lost my Dad to LBD. He was my best friend, we worked side by side 6 days a week at the same job. We shared the same hobbies and loved family. It was the hardest thing I have ever endured. A slow goodbye, losing a little bit of my dad each day. God I miss him.
Me too. We thought he was pretending and being lazy. He would leave the house without mum. We didn’t know. I didn’t realise how brave he was. It’s a tragedy and I thought it was possibly linked to concussions when he was young. But I don’t know. Love you dad. See you again my best mate.
@Santa Ñ One of the early symptoms of LBD is handwriting gets smaller, looking through his checks his hand writing started the getting smaller in 09/2014. He died June 2019. His early symptoms were not really noticeable, they could be explained away. But by 12/2016 we knew something was wrong.
@@australianmade2659my dad had a lot of concussions too- and his doctors seem to think that that would speed up the progression of this.?? Supposedly there's some studies out that people with a lot of head injuries tend to have very fast dementia progression.
My husband was diagnosed with Lewy Body Dementia 3 years ago, he was a brilliant, funny, loving man....a pilot...he now can barely walk, sleeps most of the day and has forgotten how to do most day to day things. I'm his caretaker. I'm awake most of the nights with him worried he will crawl out of bed or have a dream that scares him. It's a horrible disease. God bless all that are going through this. Pray they fine a cure or at least a treatment.
@@Aviate68 thank you so much for your kind comment. It's probably the only thing he can still remember well. I've always said, he could fly a plane today if only the world would slow down for him 😢
@@chellegriggs I think that is really great that he can still remember that. He probably has some very fond memories of aviation. I cannot begin to imagine what my life would be without aviation, or forgetting how to fly, it truly is the reason I get up in the morning. Wish you all the best.
My 58 year-old brother has been diagnosed with Lewy for three years. Only a few years ago, he supervised about 100 cement truck drivers; marshalling, scheduling and dispatching them to various customer sites. That takes a lot of skill and attention to detail. Now, we have to make his sandwiches for him because it's too complicated a task. The worst part is, he's completely aware of his predicament and is cognizant that it's getting worse.
What were your brother's first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
Lost my dad to dementia with LB 2 weeks ago. It was a slow progression downhill for almost 13 years. He became incontinent. He ultimately lost his ability to stand up and/or walk and then he faded fast from there. He had great difficulty swallowing and would breathe water and food into his lungs. Watching him struggle to breathe during his final days was soul crushing. He could not speak during his last week. I would not wish this disease on anyone.
So sorry to hear what your dad went through. What a horrible disease. I can't imagine how rough it was on your family, too. My father just passed away and it's literally killing me inside, but my fears (which didn't happen) were seeing him decline to the point where he couldn't walk at all and would just stay in bed (in the facility) all the time and deteriorate. I also feared him not remembering us. The not being able to swallow thing - whew - that was too scary to even think about. But, LBD along with Covid and kidney damage took his sweet life away. Thanks for sharing your story.
My mom passed away from a rapid form of lewy body dementia. She got diagnosed in June passed away in early July. 😢 it was so sad cause we had to watch her go threw everything and there was nothing we could do. I pray they find a cure or something to easy there pain. That is and still is the hardest thing I have ever been threw. I never got a chance to say I love u or thank u. Life is so fragile and time. To all u all who r going threw this your not alone and many prayers to you. Theres gonna be a SERIOUS solution to help ease them.
It's been so hard to see my dad change since he was diagnosed with Lewy Body with Dementia last year. There's times I feel guilty to not be there with him every day. God, why? I want my dad back to normal.
Sherri, I no longer believe in a God. How could a loving God let people suffer like this? People Will say to me it is not god who is letting him suffer. So if it is the devil than my question is where is god? It is a horrible horrible disease.
My sister had Lewy Body Dementia, for 7 years. She spent the first 4, in her house in Ridgefield, CT, with round the clock caregivers. The last 3, were at The Assisted living facility, The Residence, in Darien, CT. She started to have symptoms almost immediately. She fell, forgot where she put things, and then started hallucinating. She started to see, little furry green animals. She couldnt talk in sentences, and then became infirm. The Lewy Body Dementia, destroyed her mind and body quickly. At the end, she wouldn't eat, and then hospice was called. She passed a way, on Jan 28th, 2021.
What were her first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
My father is currently dying with and from Lewy Body Dementia. It is so hard to see. Thankyou for this clip as it has made me see that his symptoms are not different from what other Lewy Body sufferers have to endure
What were your father's initial symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
My husband is dieing from this disease right now. Six months ago he was diagnosed and already he is in final stage. He can't swallow so basically he's starving. He suffered from the worse hallucinations that you can imagine. God bless all that have it. It's a horrible way to die.
So sorry this is happening to ppl. What kind of specialist diagnose this horrific disease? I believe from my research this is what my Mom is suffering from. My sibling is working with her PVP for guidance. She hullicinated, been violent, broke her leg twice from falls. She has been struggling with these symptoms off and on for 2 years or more. It's so sad to watch her turning into a vegetable. She doesn't eat hardly anything or drink fluids either. It has happened so fast how much she has deteriorated.
@@rburns9248 Ronda, my husband was in the hospital three weeks and was diagnosed there. He had all the same symptoms your Mother has. He died on Thanksgiving day. It was a horrible time for him.
@@SandyzSerious so sorry for your loss. I watched a video of a Physician speaking about Alzheimer's and Lewy Bodie dementia, he said that a patient can have both. He also said that patients with Alzheimer's do not hallucinate and that is one symptom that distinguishes them between the two.
My experience with my dad, who’s still alive, is exactly as is described here. The slow process of watching him die due to Lewy Body Dementia, is destroying me. 😢
My mom too. I decided to stop all the meds. that cause dementia. She is getting better! Her Integrated health doctor DC, saved my mom life..the B6 complex, B1 therapy by injection, MCT oil, COQ10, D3, magnesium, is why she is much better. The halluci ations have decreased, no tremors.. still a fight daily. Really difficult to see her decline using traditional meds.
What were your first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
My grandmother was semi-recently been diagnosed for less body dementia. Her diagnosis was probably less than half a year ago, and what was her sometimes saying something completely unrelated has turned into an occurrence in every conversation. Another thing is, my aunt and uncle were living in their own home and taking care of themselves four-ish years ago. In that time to now, my uncle went to supervised living to living in a retirement home to living in a failing health center to dying in 3-ish years, and my aunt has such severe vascular dementia she can barely even express the most basic emotions, if at all. It’s been less than half a decade and both my aunt and uncle have gone from dancing and living on their own to dead/on deaths door. It’s horrifying how fast dementia and health decline in general is.
What were her first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
@@jaydarilar Listen, I'm no doctor and if you're this scared ad afraid you should probably seek a doctor. I can't and won't say much because I didn't interact with my grandmother a ton and I'm not a doctor and don't know what half those words mean. If you're that worried, I would seek a doctor.
Its rough, I can't remember how my father was, its been 5 years of decline. Last week we moved him to a care facility because it had become overwhelming for my mother to take care of him. He can't speak, just mutter nonsense Empty gaze Incontinence No memories No rational thinking Can still move around, that is good. I feel so guilty for being angry with stuff he did, not really on him, but the disease. It is NOT like caring a child. Children learn, dementia "unlearn". His presence at the same time was good but at the same time bad, because it is so sad to see him like that. I wonder if he is afraid, sad or anything like that. Its is awful to be stressed on him. I wonder that I should have been a better son, to hug him more in this life. We hadn't intimancy, but I always respected him and I am thankful for everything that I own and I am to him. If i can make amends it will be to honor his legacy, to care for my mother, to constitute a family and be a good father in the future, at least 1% as good as the man he was...
I watched someone die from this firsthand and I will tell you right now that if I had it I would give myself a lethal dose of some heroin or morphine. No way would I put my family through it or want to go through it myself. We don't let our animals suffer but we let our loved humans go through it till the end. I don't believe that's fair because they are truly in hell.
I agree 100%. It’s insane and my mom has this right now and I wouldn’t hesitate to help her go peacefully and painlessly when the time came if I could. It’s because of religious beliefs we don’t allow this, it’s wrong.
@@remedy9648 You're welcome and you are a wonderful person for taking care of her. I lived with my grandmother and grandfather at the time because there was really no one else to help out. I lost my mom in 2012 tragically and she was it. It was so tough for my grandma to lose my mom and then go through that with her husband of 60 years. It was super tough for me also. I'm actually tearing up a little bit just writing this. I did what I could, but sometimes I do feel jaded from all the sadness in the past decade of my life. Bless you and your mother.
I'm sorry for your loss and this difficult journey. We took my dad to the ER so many times here. He was forgetful, confused, and frankly hallucinating and out of his head. The ER staff would smile at us, and say "nope nothing wrong with him" and send him. My mom and I would plead... please... this isn't normal for him, did you talk to him? And then we would get told that we were being argumentative. Finally he did go into a care facility for physical ... passed away (a big shock for us) - it was only on his death certificate that we finally got a diagnosis of dementia.
That’s so sad! That must have been going on for such a long time considering how slow dementia progresses. Usually the lifespan of someone after diagnosis is about 6-10 years depending on the type :(( if he died from his dementia he must have been in the late stages where most people can’t speak in coherent sentences, are incontinent, and cannot swallow (it’s called dysphagia). Especially with Lewy bodies the hallucinations at first really point to that specific type of dementia. I’m so sorry for your loss and you had to go through that. You could sue the hospital as when you speak to someone with anyone who has dementia in the mid-late stages... you can really tell they have dementia. Hope ur okay darling
@@ayeshapurvis385 Thank you Ayesha - for caring, for reading and for holding space. Yes, he was very ill for a very long time. He had some co-morbidities ... so for the longest while we wrote it off to other conditions. But the last 2 years of my dad's life he became more like a stranger and we knew something was very wrong. It wasn't until the last, maybe 2 months of his life that we started noticing things like incomplete sentences, difficulties swallowing, not eating as much... contnence had been an issue for a long while. Where can I find out more about the hallucinations that are specific to Lewy Body? Thank you for caring. I still have nightmares about the past 2 years.
@@fayehazel1986the Lewey Body Association can help with things specific to LBD. Pets, children and babies are typical for hallucinations My mom had all three. No others. I understand the trauma in taking care of a parent day and night with this. Been through it for more than two years. Her funeral is this week.
My father constantly sees people in our house or in our yard. They are fooling around with the refrigerator or stove, taking the tires off the car, sometimes there are 15 people in his bed, it goes on and on. This is a horrible disease. There should be laws passed that when you are healthy and have your mind you can choose euthanasia if you get dementia. For gods sake we treat cats and dogs better. We need to do the same for people!!!
I just lost my father to this, plus Covid-19. For years, we never got a specific dementia diagnosis and I lived in denial. I would tell people that "he didn't really have full-out Alzheimers or anything". I didn't find out about LBD with Parkinson's until a few months ago when I asked exactly what his diagnosis was. As others have shared, it is so hard to see your loved one decline mentally and physically. We kept him at home for as long as we could, but eventually had to move him into a facility at the end of November as the dementia and incontinence worsened. That was so hard on the family mentally. He didn't have the hallucinations, but he had plenty of other symptoms. Towards the end, he experienced a lot of pain. Between this and his kidney issues and Covid, he just didn't make it. Thanks to all of you for sharing your stories.
I am going through this now with my mother-in-law and it is so sad and everyday is a new challenge. She was diagnosed with Parkinsons. It wasn't until I started keeping a journal of her incidences and progression and gave it to her neurologist that they believed us that she also had Dementia. But I honestly believe she was misdiagnosed and she has Lewy-body Dementia. Now we just try hard to keep her at home and happy for has long as we can. Any advice, thank you!
My dad died of this illness last year. Keeping your mother in law at home with her family is the best way. Focus on what she can remember and enjoy, for my dad it was his music. He recognised his favourite music right until he died. We had carers come in for the last few months and they helped a lot. I did painting with him which he seemed to enjoy. One tip I read was to put shaving foam on a tray for them to put their hands in then you can clean their hands afterwards. It's a horrible illness and incredibly sad to see loved ones suffer, we just have to make their lives as peaceful and enjoyable as we can for them.
Thank you for sharing so openly, Madonna. You expressed it so well. DLB is like a thief in the night that keeps returning to take one thing at a time until there is nothing left. It's hard for others to appreciate the emotional drain, endless losses, and anger. Unless someone has experienced it, they can't hope to understand the depths of devastation. My husband is now 60, and six years from his first symptoms of Alzheimer's and Lewy Body which includes seizures. Five years ago he had been a professional car hauler for thirty-one years and now he needs help figuring out a seatbelt and how to open the van door. Sometimes he doesn't recognize me after 32 yrs of marriage. You are absolutely right, it's relentless and robs your spouse, your future, and all you've worked hard for. Hank's and your chats with us have been far more helpful to us than anything the medical community offers. Thank you from the bottom of our broken hearts. Hugs and prayers from Canada.
My sister is going through this with her husband. He was diagnosed years ago, and is now in a care facility since breaking his hip and having surgery. He can’t get out of bed without a 2 person assist. He hallucinated frequently and makes sense only occasionally. My sister is so stressed. Because of Covid, she can see him only one hour a day. She constantly worries that he is not properly cared for. No idea when this nightmare might end. Why don’t we have better care options for everyone?
I work in a care home and read the reviews for the home online, especially by staff. People who have left there and complain of things like being under staffed and long, unpaid hours will usually mean that each individual will not be getting the correct amount of care they need. If you’re in the uk then look at the care quality commission (cqc) reports on that particular home. I’d say if it’s anything below good, try to find him somewhere else to go. Anyone who needs help out of bed will need 2 people, that’s just for safety, it doesn’t mean he’s super incapable and that it needs to worry your sister about how many people need to get him out of bed. They may need to use something called a hoist which will need to be used by two people for safety reasons and also for timing. Honestly, idk why they’re letting them see each other for an hour a day. An hour and 5 hours makes no difference to covid. One touch and he could get infected and infect the staff and all other residents so I think that says something about their policies. Your sister could ask if there is any way they could have longer meets or set up regular phone calls or FaceTime calls so they can interact longer each day. As a carer, we have been the first offered the covid vaccine. Try to reassure your sister that possibly by the end of January she will be able to see him far more regularly. I believe it’s estimated that all carehome workers and care home residents will be vaccinated by March. I hope this helped a bit, tried to give as much information as I could. I wish your sister and her husband luck.
I'm not really sure what to say that can help, you might need to hire additional help for physical therapy and care than what a nursing home provide, but that's probably very expensive. Care for LBD patients is very time intensive. I was pretty unhappy with the care my dad got when he had to be put in a nursing home. They blamed in on staffing shortages. Physical therapy was non-existent and he was rarely allowed out of his bed, which just led to more rapid progression of his disease. Other than meal times and when family visited he was alone all the time, except for his roommate who could also only lay in bed all day and other residents who would randomly wander into his room and stress him out. My 'favorite' was the resident who always made a point to remark to me "Your dad is getting what he deserves for the bad things he did," which is nothing. Yeah, it's just really bad.
This really shouldn't be allowed to progress to such extremes. It is tantamount to torture. How can the loved ones left behind live with witnessing such a violent and unhumane end?
I work in the activities department of a skilled nursing facility. It can be really hard if you don’t know how to redirect someone having a hallucination.
My husband was diagnosed with Lewy Body Dementia 3 years ago, he was a brilliant, funny, loving man....a pilot...he now can barely walk, sleeps most of the day and has forgotten how to do most day to day things. I'm his caretaker. I'm awake most of the nights with him worried he will call out of bed or have a dream that scares him. It's a horrible disease. God bless all that are going through this. Pray they fine a cure or at least a treatment.
@@chellegriggs So so sorry. I bet its horrible and worse for you as he will not know what's going on. Its a terrible disease watching your loved one disappear and just a body left basically. Hope you have family to support you. Take care.
@@chellegriggs What were his first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
I feel strongly that the moment this diagnosis is given, the main focus of the medical community should shift to the wife or husband. My husband is currently quite comfortable in his state…I on the other hand am exhausted, frightened, angry, sad, horrified and lonely. What is the diagnosis and treatment for us when we can barely find the energy and will to wake up in the morning.?
Find her a doctor she likes and who is willing to CARE and not just take your money! And do things with her as much as possible that she likes. Caring for them takes a LOT out of you. If you have family that can help out, you can take turns. I've read that hearing loss is tied to it. Much love!
My father has this, it’s horrible to see. He had tried to kill himself as he knew what would be in store, and I don’t blame him! but now can hardly lift his arms. He has a family of cats under his bed, apparently. Got to find humour in it somehow!
My mom got diagnosed with this dementia 4 months ago and oh my god, she's so much suffering from horrible hallucination and memory loss. This is a slow and poisonous death. I'm too dying cause it's really difficult to be a caretaker 😭
My husband has Lewy Body Dementia. He had insomnia and night terrors in 1982 then In 2002 he lost his sense of smell and had tinnitus. In 2011 he started kicking, screaming, barking and biting. He did not believe me until I showed him videos on my phone. He saw a neurologist while waiting 6 months to be evaluated he started hallucinating. He was diagnosed in 2018 with mci, now I believe he is in stage 6 because of inconsistent, falling and being uncooperative. He wanders and walks 15 hours a day. He touches everything and breaks things, moves furniture and rearranges his room constantly. It is like having a 6 foot 2 year old.
Very sad situation. I am sorry that this happened to your loved one. What struck most, me of all the things you spoke of is how you told him ‘…to get on the train, and that you would meet up with him.’ Letting him know that it is okay if he chooses to go, and he will see you again one day.
I wish the family members of LBD patients a lot of strength. It's a horrible disease that slowly takes away your loved one. Both the mental and physical decline are painfull to watch. I lost my mom to it. We fought hard for her euthanasia, since it was her wish. I know i'll never do anything as hard and painfull again in my life...
I have been diagnosed with this just recently. I find it difficult in accepting a diagnosis of which I have no symptoms. I am an educated individual and have read and listened to multiple videos and articles with regards to Lewy Body Dementia. Still in disbelief and seeking a second opinion.
@@MBT372 apparently by special PET scan and behavioral changes. When I talk about symptoms it is physical symptoms, although recently I have developed tremors.
Hey Cindy, I too have had a recent diagnosis of Lewy Body this RUclips channel is Life Recovery Services LLC is a very nice middle aged couple where the husband Hank was diagnosed at 46 and is now 56. They are journaling his dementia in hopes of helping others. My symptoms started years ago with very severe leg pain. Nobody could find any answers but my symptoms kept changing to stiffness, falls or tripping over my feet to cognitive difficulties like not remembering to shower or my neighbors names Everyone carries it differently but def get another opinion if you feel you need to.
I'm a 52 y.o. female with RBD diagnosis from 9 years ago. I have been on Mirapex for 9 years. At the time of diagnosis, the relation from RBD to parkinson's was 35% to 65%.....old news. Now with new information, 97% with RBD progress to Parkinson's, Lewy body, or MSA. it's been almost 10 years and 15 years since symptoms started. I am just seeking what I have to face as 97% is almost 100%. Any advice would help.
Seek prayer CBN @ God healed my dementia. I'm praying the Lord will heal your body from the top of your head to the soles of your feet. Psalm 6:2; Deutr. 28:5.. What I did for my mom I paid for a Bio Integrated Health Doctor, she was taken off the statin drugs.that caused drug induced Parkinsonism.. MCT oil is a good start to reverae Dementia, seek MH therapist asap and release any stored trauma, seek a body therapist Somatic is good! (RUclips Sukie Baxter), treat your body well☆ deep breathing, exercise daily, release any negative energy, seek B6 complex and B1 Thiamin therapies, CoQ10, Magnesuim. Fall im love with your body, and mind.. As a healer I declare your healing in the name of Jesus. Walk in it. And in agreement you will improve instantly.. may your faith increase .. No giving up!!!!
Uncle had LBD, it was horrific. Huge, strong man. All-American football, Air Force hero, inventor of something you use. Decimated him. Hallucinations, the whole shebang.
I am not stupid, but this disease and it's progression is very confusing. My dad seems to have it, but he only gets tremors sometimes. Sometimes muscle spasms. He definitely has the Parkinson's stiffness and gait. He loves to get on the vibration plate. I let him use it sitting down. I think it helps him keep his leg strength. His balance is bad, so I hope it's of help with that too. I am so scared all the time he's going to fall.
My husband died of this terrible disease on Feb 20, 2024. He to was diagnosed with Parkinson's first.. Watching him fail was awful.. 22 yrs in the USMC.. Body Builder.. Happy man loved to dance. He loved his family children, grndchildren and great grandchildren I prayed for him to go without pain. I prayed for hism to last til our 45th anniversary He made it... He passed quietly.
![Cody Johnson - I'm Gonna Love You (with Carrie Underwood) [Official Music Video]](http://i.ytimg.com/vi/yy9PuYMU29g/mqdefault.jpg)
Lost my Dad to LBD. He was my best friend, we worked side by side 6 days a week at the same job. We shared the same hobbies and loved family. It was the hardest thing I have ever endured. A slow goodbye, losing a little bit of my dad each day. God I miss him.
Me too. We thought he was pretending and being lazy. He would leave the house without mum. We didn’t know. I didn’t realise how brave he was. It’s a tragedy and I thought it was possibly linked to concussions when he was young. But I don’t know. Love you dad. See you again my best mate.
@Santa Ñ One of the early symptoms of LBD is handwriting gets smaller, looking through his checks his hand writing started the getting smaller in 09/2014. He died June 2019. His early symptoms were not really noticeable, they could be explained away. But by 12/2016 we knew something was wrong.
@@australianmade2659my dad had a lot of concussions too- and his doctors seem to think that that would speed up the progression of this.?? Supposedly there's some studies out that people with a lot of head injuries tend to have very fast dementia progression.
❤️
My husband was diagnosed with Lewy Body Dementia 3 years ago, he was a brilliant, funny, loving man....a pilot...he now can barely walk, sleeps most of the day and has forgotten how to do most day to day things. I'm his caretaker. I'm awake most of the nights with him worried he will crawl out of bed or have a dream that scares him. It's a horrible disease. God bless all that are going through this. Pray they fine a cure or at least a treatment.
Currently a brand new pilot. I feel very bad that that was stripped away from him.
@@Aviate68 thank you so much for your kind comment. It's probably the only thing he can still remember well. I've always said, he could fly a plane today if only the world would slow down for him 😢
@@chellegriggs I think that is really great that he can still remember that. He probably has some very fond memories of aviation. I cannot begin to imagine what my life would be without aviation, or forgetting how to fly, it truly is the reason I get up in the morning. Wish you all the best.
I fixed my mom who had stage 7,dementia with CBD oil. 20/1 twice a day
@@colleenpenny6304 what does the 20/1 mean? I have some CBC oil...didn't know if could help him. Can you give me the info?
When she said to get on the train and I’ll catch a later one, I lost it. How beautiful. ❤️
Me too. Sad but beautiful.
My 58 year-old brother has been diagnosed with Lewy for three years. Only a few years ago, he supervised about 100 cement truck drivers; marshalling, scheduling and dispatching them to various customer sites. That takes a lot of skill and attention to detail. Now, we have to make his sandwiches for him because it's too complicated a task. The worst part is, he's completely aware of his predicament and is cognizant that it's getting worse.
My grandma didn't have LBD but she was aware of her post-stroke dementia. She knew she was getting worse. She left us in July.
What were your brother's first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
to have a person tell me they’ll catch the later train, i would’ve cried so hard
Lost my dad to dementia with LB 2 weeks ago. It was a slow progression downhill for almost 13 years. He became incontinent. He ultimately lost his ability to stand up and/or walk and then he faded fast from there. He had great difficulty swallowing and would breathe water and food into his lungs. Watching him struggle to breathe during his final days was soul crushing. He could not speak during his last week. I would not wish this disease on anyone.
So sorry to hear what your dad went through. What a horrible disease. I can't imagine how rough it was on your family, too. My father just passed away and it's literally killing me inside, but my fears (which didn't happen) were seeing him decline to the point where he couldn't walk at all and would just stay in bed (in the facility) all the time and deteriorate. I also feared him not remembering us. The not being able to swallow thing - whew - that was too scary to even think about. But, LBD along with Covid and kidney damage took his sweet life away. Thanks for sharing your story.
My mom passed away from a rapid form of lewy body dementia. She got diagnosed in June passed away in early July. 😢 it was so sad cause we had to watch her go threw everything and there was nothing we could do. I pray they find a cure or something to easy there pain. That is and still is the hardest thing I have ever been threw. I never got a chance to say I love u or thank u. Life is so fragile and time. To all u all who r going threw this your not alone and many prayers to you. Theres gonna be a SERIOUS solution to help ease them.
It's been so hard to see my dad change since he was diagnosed with Lewy Body with Dementia last year. There's times I feel guilty to not be there with him every day. God, why? I want my dad back to normal.
I'm so sorry. I want my dad back too.
My father also have this disease, he is in last phase he can't walk I belive it's his last year... Im so depressed because of that.
@@thundragurcharanml n o
I lost my father on this 24th Feb because of Alzheimer's. It cant be cured and the suffering is unbearable.
Sherri, I no longer believe in a God. How could a loving God let people suffer like this? People Will say to me it is not god who is letting him suffer. So if it is the devil than my question is where is god? It is a horrible horrible disease.
Robin Williams made the right decision
My sister had Lewy Body Dementia, for 7 years. She spent the first 4, in her house in Ridgefield, CT, with round the clock caregivers. The last 3, were at The Assisted living facility, The Residence, in Darien, CT. She started to have symptoms almost immediately. She fell, forgot where she put things, and then started hallucinating. She started to see, little furry green animals. She couldnt talk in sentences, and then became infirm. The Lewy Body Dementia, destroyed her mind and body quickly. At the end, she wouldn't eat, and then hospice was called. She passed a way, on Jan 28th, 2021.
What were her first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
May she rest in peace X
My father is currently dying with and from Lewy Body Dementia. It is so hard to see. Thankyou for this clip as it has made me see that his symptoms are not different from what other Lewy Body sufferers have to endure
What were your father's initial symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
My husband is dieing from this disease right now. Six months ago he was diagnosed and already he is in final stage. He can't swallow so basically he's starving. He suffered from the worse hallucinations that you can imagine. God bless all that have it. It's a horrible way to die.
So sorry this is happening to ppl.
What kind of specialist diagnose this horrific disease? I believe from my research this is what my Mom is suffering from. My sibling is working with her PVP for guidance. She hullicinated, been violent, broke her leg twice from falls. She has been struggling with these symptoms off and on for 2 years or more. It's so sad to watch her turning into a vegetable. She doesn't eat hardly anything or drink fluids either. It has happened so fast how much she has deteriorated.
@@rburns9248 Ronda, my husband was in the hospital three weeks and was diagnosed there. He had all the same symptoms your Mother has. He died on Thanksgiving day. It was a horrible time for him.
@@SandyzSerious so sorry for your loss.
I watched a video of a Physician speaking about Alzheimer's and Lewy Bodie dementia, he said that a patient can have both. He also said that patients with Alzheimer's do not hallucinate and that is one symptom that distinguishes them between the two.
@@rburns9248 Exactly.
@@suzymoon2067 Suzy, I'm so sorry to hear this. Can your mom still swallow? She is blessed to have a wonderful daughter. My heart is with you.
Wishing all of you who are dealing with a loved one who has this, lots of love and hugs. 😘😘😘
What an Amazing wife! This education has brought So Much help to our family!
My experience with my dad, who’s still alive, is exactly as is described here. The slow process of watching him die due to Lewy Body Dementia, is destroying me. 😢
My mom too. I decided to stop all the meds. that cause dementia. She is getting better! Her Integrated health doctor DC, saved my mom life..the B6 complex, B1 therapy by injection, MCT oil, COQ10, D3, magnesium, is why she is much better. The halluci ations have decreased, no tremors.. still a fight daily. Really difficult to see her decline using traditional meds.
Thanks for this, I'm 59 yrs old from Scotland, and I've been diagnosed with this ...
Good luck buddy
Sorry to hear this. Do you have help from your family or children?
@@kiloton1920
Yes I've got help, thanks 👍
What were your first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
@@jaydarilar
Poor short term memory
My grandmother was semi-recently been diagnosed for less body dementia. Her diagnosis was probably less than half a year ago, and what was her sometimes saying something completely unrelated has turned into an occurrence in every conversation. Another thing is, my aunt and uncle were living in their own home and taking care of themselves four-ish years ago. In that time to now, my uncle went to supervised living to living in a retirement home to living in a failing health center to dying in 3-ish years, and my aunt has such severe vascular dementia she can barely even express the most basic emotions, if at all. It’s been less than half a decade and both my aunt and uncle have gone from dancing and living on their own to dead/on deaths door. It’s horrifying how fast dementia and health decline in general is.
What were her first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
@@jaydarilar Listen, I'm no doctor and if you're this scared ad afraid you should probably seek a doctor. I can't and won't say much because I didn't interact with my grandmother a ton and I'm not a doctor and don't know what half those words mean. If you're that worried, I would seek a doctor.
@@BPS298 There is no medical help, unless you have a strong support system . It's 2022
Thank you for this helpful information!! This horrible disease runs in my family.
IT'S GENETIC? MY DAD DIED FROM IT. CRAP!!
So sad 😞
Same. 😫
Its rough, I can't remember how my father was, its been 5 years of decline.
Last week we moved him to a care facility because it had become overwhelming for my mother to take care of him.
He can't speak, just mutter nonsense
Empty gaze
Incontinence
No memories
No rational thinking
Can still move around, that is good.
I feel so guilty for being angry with stuff he did, not really on him, but the disease. It is NOT like caring a child. Children learn, dementia "unlearn".
His presence at the same time was good but at the same time bad, because it is so sad to see him like that. I wonder if he is afraid, sad or anything like that. Its is awful to be stressed on him.
I wonder that I should have been a better son, to hug him more in this life. We hadn't intimancy, but I always respected him and I am thankful for everything that I own and I am to him. If i can make amends it will be to honor his legacy, to care for my mother, to constitute a family and be a good father in the future, at least 1% as good as the man he was...
“If you decide to get on the train, then I will catch a later train & meet you!”🥰 So beautiful, metaphoric & full of LOVE!❤❤❤❤
We're going through this now with my father in law. It's a horrible, awful disease.
True ey.
I watched someone die from this firsthand and I will tell you right now that if I had it I would give myself a lethal dose of some heroin or morphine. No way would I put my family through it or want to go through it myself. We don't let our animals suffer but we let our loved humans go through it till the end. I don't believe that's fair because they are truly in hell.
I agree 100%. It’s insane and my mom has this right now and I wouldn’t hesitate to help her go peacefully and painlessly when the time came if I could. It’s because of religious beliefs we don’t allow this, it’s wrong.
@@remedy9648 I hope she is at peace soon. Such a hard thing to deal with for everyone and sad.
@@MisanthropicTimeSlipperz thank you so much💜
@@remedy9648 You're welcome and you are a wonderful person for taking care of her. I lived with my grandmother and grandfather at the time because there was really no one else to help out. I lost my mom in 2012 tragically and she was it. It was so tough for my grandma to lose my mom and then go through that with her husband of 60 years. It was super tough for me also. I'm actually tearing up a little bit just writing this. I did what I could, but sometimes I do feel jaded from all the sadness in the past decade of my life. Bless you and your mother.
You are so right…..dignity of choice ……where is it?
Thank You So Much For More Information into this Awful Disease.
So sad. Tears to my eyes
I'm sorry for your loss and this difficult journey. We took my dad to the ER so many times here. He was forgetful, confused, and frankly hallucinating and out of his head. The ER staff would smile at us, and say "nope nothing wrong with him" and send him. My mom and I would plead... please... this isn't normal for him, did you talk to him? And then we would get told that we were being argumentative. Finally he did go into a care facility for physical ... passed away (a big shock for us) - it was only on his death certificate that we finally got a diagnosis of dementia.
That’s so sad! That must have been going on for such a long time considering how slow dementia progresses. Usually the lifespan of someone after diagnosis is about 6-10 years depending on the type :(( if he died from his dementia he must have been in the late stages where most people can’t speak in coherent sentences, are incontinent, and cannot swallow (it’s called dysphagia). Especially with Lewy bodies the hallucinations at first really point to that specific type of dementia. I’m so sorry for your loss and you had to go through that. You could sue the hospital as when you speak to someone with anyone who has dementia in the mid-late stages... you can really tell they have dementia. Hope ur okay darling
@@ayeshapurvis385 Thank you Ayesha - for caring, for reading and for holding space. Yes, he was very ill for a very long time. He had some co-morbidities ... so for the longest while we wrote it off to other conditions. But the last 2 years of my dad's life he became more like a stranger and we knew something was very wrong. It wasn't until the last, maybe 2 months of his life that we started noticing things like incomplete sentences, difficulties swallowing, not eating as much... contnence had been an issue for a long while.
Where can I find out more about the hallucinations that are specific to Lewy Body?
Thank you for caring. I still have nightmares about the past 2 years.
@@fayehazel1986the Lewey Body Association can help with things specific to LBD. Pets, children and babies are typical for hallucinations My mom had all three. No others. I understand the trauma in taking care of a parent day and night with this. Been through it for more than two years. Her funeral is this week.
@@fayehazel1986 My dad often saw dogs and children. They didn't bother him, but they weren't there.
My father constantly sees people in our house or in our yard. They are fooling around with the refrigerator or stove, taking the tires off the car, sometimes there are 15 people in his bed, it goes on and on. This is a horrible disease. There should be laws passed that when you are healthy and have your mind you can choose euthanasia if you get dementia. For gods sake we treat cats and dogs better. We need to do the same for people!!!
I just lost my father to this, plus Covid-19. For years, we never got a specific dementia diagnosis and I lived in denial. I would tell people that "he didn't really have full-out Alzheimers or anything". I didn't find out about LBD with Parkinson's until a few months ago when I asked exactly what his diagnosis was. As others have shared, it is so hard to see your loved one decline mentally and physically. We kept him at home for as long as we could, but eventually had to move him into a facility at the end of November as the dementia and incontinence worsened. That was so hard on the family mentally. He didn't have the hallucinations, but he had plenty of other symptoms. Towards the end, he experienced a lot of pain. Between this and his kidney issues and Covid, he just didn't make it. Thanks to all of you for sharing your stories.
I am going through this now with my mother-in-law and it is so sad and everyday is a new challenge. She was diagnosed with Parkinsons. It wasn't until I started keeping a journal of her incidences and progression and gave it to her neurologist that they believed us that she also had Dementia. But I honestly believe she was misdiagnosed and she has Lewy-body Dementia. Now we just try hard to keep her at home and happy for has long as we can. Any advice, thank you!
My dad died of this illness last year. Keeping your mother in law at home with her family is the best way. Focus on what she can remember and enjoy, for my dad it was his music. He recognised his favourite music right until he died. We had carers come in for the last few months and they helped a lot. I did painting with him which he seemed to enjoy. One tip I read was to put shaving foam on a tray for them to put their hands in then you can clean their hands afterwards. It's a horrible illness and incredibly sad to see loved ones suffer, we just have to make their lives as peaceful and enjoyable as we can for them.
Parkinson's and Lewy body dementia are the same disease, it depends whether it affects your muscle control first or your intellect.
So odd how intelligent people are the ones who usually get dementia.
Thank you for sharing so openly, Madonna. You expressed it so well. DLB is like a thief in the night that keeps returning to take one thing at a time until there is nothing left. It's hard for others to appreciate the emotional drain, endless losses, and anger. Unless someone has experienced it, they can't hope to understand the depths of devastation. My husband is now 60, and six years from his first symptoms of Alzheimer's and Lewy Body which includes seizures. Five years ago he had been a professional car hauler for thirty-one years and now he needs help figuring out a seatbelt and how to open the van door. Sometimes he doesn't recognize me after 32 yrs of marriage. You are absolutely right, it's relentless and robs your spouse, your future, and all you've worked hard for. Hank's and your chats with us have been far more helpful to us than anything the medical community offers. Thank you from the bottom of our broken hearts. Hugs and prayers from Canada.
We lost mom to LBD last week… the changes were swift and frightening
My sister is going through this with her husband. He was diagnosed years ago, and is now in a care facility since breaking his hip and having surgery. He can’t get out of bed without a 2 person assist. He hallucinated frequently and makes sense only occasionally. My sister is so stressed. Because of Covid, she can see him only one hour a day. She constantly worries that he is not properly cared for. No idea when this nightmare might end. Why don’t we have better care options for everyone?
I work in a care home and read the reviews for the home online, especially by staff. People who have left there and complain of things like being under staffed and long, unpaid hours will usually mean that each individual will not be getting the correct amount of care they need. If you’re in the uk then look at the care quality commission (cqc) reports on that particular home. I’d say if it’s anything below good, try to find him somewhere else to go.
Anyone who needs help out of bed will need 2 people, that’s just for safety, it doesn’t mean he’s super incapable and that it needs to worry your sister about how many people need to get him out of bed. They may need to use something called a hoist which will need to be used by two people for safety reasons and also for timing.
Honestly, idk why they’re letting them see each other for an hour a day. An hour and 5 hours makes no difference to covid. One touch and he could get infected and infect the staff and all other residents so I think that says something about their policies. Your sister could ask if there is any way they could have longer meets or set up regular phone calls or FaceTime calls so they can interact longer each day. As a carer, we have been the first offered the covid vaccine. Try to reassure your sister that possibly by the end of January she will be able to see him far more regularly. I believe it’s estimated that all carehome workers and care home residents will be vaccinated by March.
I hope this helped a bit, tried to give as much information as I could. I wish your sister and her husband luck.
I'm not really sure what to say that can help, you might need to hire additional help for physical therapy and care than what a nursing home provide, but that's probably very expensive. Care for LBD patients is very time intensive. I was pretty unhappy with the care my dad got when he had to be put in a nursing home. They blamed in on staffing shortages. Physical therapy was non-existent and he was rarely allowed out of his bed, which just led to more rapid progression of his disease. Other than meal times and when family visited he was alone all the time, except for his roommate who could also only lay in bed all day and other residents who would randomly wander into his room and stress him out. My 'favorite' was the resident who always made a point to remark to me "Your dad is getting what he deserves for the bad things he did," which is nothing.
Yeah, it's just really bad.
End of civilization unless are rich or have money and close 👪 ?
I forgot my husband is 77 years old and was a engineer.
All to familiar, very well described. My partner had everything mentioned here. Very hard to watch a loved one go through LBD
This really shouldn't be allowed to progress to such extremes. It is tantamount to torture. How can the loved ones left behind live with witnessing such a violent and unhumane end?
I work in the activities department of a skilled nursing facility. It can be really hard if you don’t know how to redirect someone having a hallucination.
I had a close companion with this cruel disease. It was just horrible to see my loved one go through with this. 😢
Lost my husband in June to Parkinson's disease. He had it for 10 years. What it does to your mind and body is devastating.
This is so deeply sad to see happen to anyone, especially a loved one. I wonder what makes their brain start seeing things and having hallucinations?
Very sad.
Exactly like my husband.
Joe Biden has the beginnings of this
I'd say he's beyond the beginning stages. He's degenerating fast.
It's so obvious 😢
Oh I thought it was Screwy Body Disease. I stand corrected
It seems to affect very intelligent people what i have seen on videos on here and lot of men.
It is diagnosed more in men than women.
My husband was diagnosed with Lewy Body Dementia 3 years ago, he was a brilliant, funny, loving man....a pilot...he now can barely walk, sleeps most of the day and has forgotten how to do most day to day things. I'm his caretaker. I'm awake most of the nights with him worried he will call out of bed or have a dream that scares him. It's a horrible disease. God bless all that are going through this. Pray they fine a cure or at least a treatment.
@@chellegriggs So so sorry. I bet its horrible and worse for you as he will not know what's going on. Its a terrible disease watching your loved one disappear and just a body left basically. Hope you have family to support you. Take care.
@@pam164 thank you for your comment. Yes, I am one of the lucky ones...I have a large family and a lot of support...💕
@@chellegriggs What were his first symptoms? I am 27 years old and have suffered from fatigue, seborrhea, postural hypotension, depression and anxiety for almost 11 years. I am deathly afraid that I may have synnucleopathy. I also sometimes jump out of bed and scream.
Poor baby, Rest In Peace Bob, love you my man
Who has a Large Support Group, WHO?
Mennonites have a support. AMISH? I dont have support
Before 2022 i couldn't find any support . It got way worse past 5years
You just described Joe Biden
We are living the same hell,,, it is horrid,,
We donot wish this on anyone.
I feel strongly that the moment this diagnosis is given, the main focus of the medical community should shift to the wife or husband. My husband is currently quite comfortable in his state…I on the other hand am exhausted, frightened, angry, sad, horrified and lonely. What is the diagnosis and treatment for us when we can barely find the energy and will to wake up in the morning.?
I think this is good
My grandmother just got diagnosed with this. If y’all have any advice please let me know!
Find her a doctor she likes and who is willing to CARE and not just take your money! And do things with her as much as possible that she likes. Caring for them takes a LOT out of you. If you have family that can help out, you can take turns. I've read that hearing loss is tied to it. Much love!
@@jh9391Hearing loss? As a sign of LBD or that not addressing hearing loss and helping it with hearing aids can make LBD worse?
This looks like what Joe Biden might have.
Yep.
Who was your neurologist? I live in so Indiana
SUPPORT GROUP MY BUTT!!
O
My father has this, it’s horrible to see. He had tried to kill himself as he knew what would be in store, and I don’t blame him! but now can hardly lift his arms. He has a family of cats under his bed, apparently. Got to find humour in it somehow!
Wow she didn’t have to share that train story with us but she did and its very heart breaking.
My father passed away this father's day from this disease. I hope we find a cure.
How long did he have the disease?
I rather be dead for sure
My mom got diagnosed with this dementia 4 months ago and oh my god, she's so much suffering from horrible hallucination and memory loss. This is a slow and poisonous death. I'm too dying cause it's really difficult to be a caretaker 😭
I take mother in law for 4 years os exhausting be careful sometimes I feel o going to die before them and she 81
My husband has Lewy Body Dementia. He had insomnia and night terrors in 1982 then In 2002 he lost his sense of smell and had tinnitus. In 2011 he started kicking, screaming, barking and biting. He did not believe me until I showed him videos on my phone. He saw a neurologist while waiting 6 months to be evaluated he started hallucinating. He was diagnosed in 2018 with mci, now I believe he is in stage 6 because of inconsistent, falling and being uncooperative. He wanders and walks 15 hours a day. He touches everything and breaks things, moves furniture and rearranges his room constantly. It is like having a 6 foot 2 year old.
Very sad situation. I am sorry that this happened to your loved one. What struck most, me of all the things you spoke of is how you told him ‘…to get on the train, and that you would meet up with him.’ Letting him know that it is okay if he chooses to go, and he will see you again one day.
I wish the family members of LBD patients a lot of strength. It's a horrible disease that slowly takes away your loved one. Both the mental and physical decline are painfull to watch. I lost my mom to it. We fought hard for her euthanasia, since it was her wish. I know i'll never do anything as hard and painfull again in my life...
My brother passed way as a result of Lewy Bodies. He was only 54 years old.
I have been diagnosed with this just recently. I find it difficult in accepting a diagnosis of which I have no symptoms. I am an educated individual and have read and listened to multiple videos and articles with regards to Lewy Body Dementia. Still in disbelief and seeking a second opinion.
Then how? If you have no symptoms?
@@MBT372 apparently by special PET scan and behavioral changes. When I talk about symptoms it is physical symptoms, although recently I have developed tremors.
Hey Cindy, I too have had a recent diagnosis of Lewy Body this RUclips channel is Life Recovery Services LLC is a very nice middle aged couple where the husband Hank was diagnosed at 46 and is now 56. They are journaling his dementia in hopes of helping others. My symptoms started years ago with very severe leg pain. Nobody could find any answers but my symptoms kept changing to stiffness, falls or tripping over my feet to cognitive difficulties like not remembering to shower or my neighbors names
Everyone carries it differently but def get another opinion if you feel you need to.
Wonder if there is a connection either between the aluminum in body deodorants or parasites or both ❤
I'm a 52 y.o. female with RBD diagnosis from 9 years ago. I have been on Mirapex for 9 years. At the time of diagnosis, the relation from RBD to parkinson's was 35% to 65%.....old news.
Now with new information, 97% with RBD progress to Parkinson's, Lewy body, or MSA. it's been almost 10 years and 15 years since symptoms started. I am just seeking what I have to face as 97% is almost 100%. Any advice would help.
Seek prayer CBN @ God healed my dementia. I'm praying the Lord will heal your body from the top of your head to the soles of your feet. Psalm 6:2; Deutr. 28:5.. What I did for my mom I paid for a Bio Integrated Health Doctor, she was taken off the statin drugs.that caused drug induced Parkinsonism.. MCT oil is a good start to reverae Dementia, seek MH therapist asap and release any stored trauma, seek a body therapist Somatic is good! (RUclips Sukie Baxter), treat your body well☆ deep breathing, exercise daily, release any negative energy, seek B6 complex and B1 Thiamin therapies, CoQ10, Magnesuim.
Fall im love with your body, and mind.. As a healer I declare your healing in the name of Jesus.
Walk in it. And in agreement you will improve instantly.. may your faith increase
.. No giving up!!!!
Uncle had LBD, it was horrific. Huge, strong man. All-American football, Air Force hero, inventor of something you use.
Decimated him.
Hallucinations, the whole shebang.
I am not stupid, but this disease and it's progression is very confusing. My dad seems to have it, but he only gets tremors sometimes. Sometimes muscle spasms. He definitely has the Parkinson's stiffness and gait.
He loves to get on the vibration plate. I let him use it sitting down. I think it helps him keep his leg strength. His balance is bad, so I hope it's of help with that too. I am so scared all the time he's going to fall.
Ty for sharing your experience
what a terrible disease 😢
How old was he?
Beautiful love story.
❤
My husband died of this terrible disease on Feb 20, 2024. He to was diagnosed with Parkinson's first.. Watching him fail was awful.. 22 yrs in the USMC.. Body Builder.. Happy man loved to dance. He loved his family children, grndchildren and great grandchildren I prayed for him to go without pain. I prayed for hism to last til our 45th anniversary He made it... He passed quietly.
Passed what?
@@Alfie198...away Alfie. He passed away.
my mom has it
Wtf are these captions from
Wtf is ur issue with it
Agreed.
Random, bizarre, non-associative.
.
Hey!, I resemble that remark!