Such a moving video. My mom suffered with this cruel disease. It turned her into someone I did not know before she died. The most difficult thing we have ever endured. Prayers to you and your family.
For us the same. We care for my Mum since five years (after being diagnosed). It has been very cruelly progressive and made her age unbelievingly in a short time. With the loss of almost any ability. It is so heartbreaking. She always looked 10 yrs younger before that horrible disease hit her. She went dancing with friends, even travelled by herself. We try to hold her - but it is very very hard. Blessing to your family.
I'm 43yrs old and was just given a diagnosis of LBD today. It hasn't really sunk in yet, it's taken my neurologist over a yr to diagnose. I have epilepsy, Crohn's disease, chronic pancreatitis, Trigeminal Nuralga, Addison's disease and gastroparesis. I started having the hallucinations after being hospitalized for bacterial pneumonia in February after having tested positive for A flu. I'm trying to do as much research as possible so I know what I'm dealing with. Its heartbreaking because I have a 29yr & 10yr old daughter and 2 granddaughters, I haven't told our oldest yet bc it hurts my heart to tell her.
I'm so sorry to hear of your diagnosis, and the many other medical issues. I came across a channel on utube called Molly's Movement or Molly's Mission. It's about a lady that has Louy Body dementia and her wonderful son Joey who documents her journey with this disease. It's a great series and her son is so amazing with her. It's very informative and something you may be interested in watching. I wish the best for you. You are in my thoughts and prayers. May you enjoy the comming holidays. Huggs♡
Heather Leslie you are so young for LBD please consider a second opinion, I hope and pray you do well and live long without too many side effects good luck
Thank you so much. I was looking around and found this.I will now get my mum to the neurologist, it seems I'm the only one who's noticing.I was moved by you and have now taken some courage from you to help my mum.Best regards from Norfolk, U.K.
I am so sorry for your loss. You are a wonderful daughter and thank you for sharing your wonderful childhood and your mother love. May she rest in peace. God Bless!
This is a lovely and moving video! Thank you for sharing your Mom's story. It's easy to see what a wonderful person she was. God bless you for taking such good care of her!
I'm just beginning our story with my mom and this disease. I can totally relate to your feelings about your mother. This is one of the most tasteful and educating videos I have ever watched. Thank you for sharing this.
WOW. I can’t believe how this story is an exact replica of what my mother went through. She too was diagnosed with Lewy Body dementia and passed in 2015. All the stages you’ve described my mother went through as well up until she was bed ridden for the last yr and half of her life.
A beautiful lady. Well done for sharing your story. Keep telling your story as I was totally oblivious to Lewy Body and have recently met a lady who I care for who has it. You put things so well and I can identify with a lot that you said. Thank you.
My mom died from this on December 8 last year. It is truly one of the cruelest diseases our family had to endure. The only thing that helps is we believe she is in heaven now and can walk again. I’m truly sorry your family or any family for that matter ever has to deal with this horrendous disease.
This was wonderfully done! We are going through this currently and I’ve been watching different peoples accounts of their journeys and it’s really helping so I thank you. I just learned about Lewy Body dementia a couple days ago and I think it’s the type my mother in law has I just told my husband and his sister to speak to the doctor to test her to see. Because right now it’s just been the generic “probably dementia “, but that’s not enough in my eyes. Thank you 🙏
Thank you for sharing the celebration of this lady. This gives me comfort when I am coming to terms with the knowledge that my best friend now has this disease, and goodness knows how the next few years will be for him, his wife and their family.
I just lost my mom 18 days ago from so many of the same 4hings you have described. It seems to me that we don't know enough to help our loved ones until it is too late. Mom lived 90 years, mostly healthy, except the last few. Thank you for sharing tour story
Thank you so much for your honesty and openness. I am sorry for your loss but hope your good memories are vivid and your smiles are big. Wishing you a Happy and peaceful NewYear from the U.K.
Thank you for sharing your journey. I had an identical 7 year experience with my own mother's illness in the late 80's. Despite being a physician at a university medical center myself, it was a very difficult road, unpredictable, frustrating, and frightening. Almost as if one had to beg for help, care, and direction in enduring the experience. Clearly, you understand the scripture quote "for it is in the fire that gold is tested". You are gold. You did a great job. No daughter could have done more. Take pride and comfort in the outstanding, loving, caring role you were compelled to fulfill in the long last chapter of a precious soul. God bless. Jim Klein MD
God bless you beautiful daughter. You were the sunshine in her life, her advocate, her best friend, and constant. My mother suffers from a cognitive disease Thank you for sharing your mother’s story. I am not alone.
Thank you so much for this video. I think every story we hear about Lewy Bodies is different because of what part of the brain is effected. Everyone needs to know that you can only deal with their current state and not assume what the next will be like. It was nice to hear that it is possible to have a loving experience until the end. The lack of a diagnosis is unconscionable, as is the use of the wrong medication. But medical centers don't seem to expect that of their doctors these days. I hope you write them a letter explaining what this does to a person and their family.
Thank you for sharing your Mom’s and your story. She sounds like a very sweet and wonderful lady. God bless you and be with you during all the times you miss her.💙
Thank you this has helped me. My father recently died of Lewy Body Dementia. He'd had mild dementia and mild mobility problems for years but overall seemed well. Then when they implemented the lockdown here, his health rapidly deteriorated because he lost all of his support and activity groups which had been keeping him mentally and physically active and well. His muscles became very stiff and within a few months he could no longer walk. Then he had a stroke. The hospital at that point said they thought he had lewy body dementia but couldn't diagnose it as they couldn't get a clear scan. We had a lovely few months with him at home where we'd listen to his favourite music, sing, talk and laugh. We were all fortunate that he never lost his awareness of his music or his family. I think we were in denial about his illness because he had moments of seeming very lucid and aware. We had carers for him 3 times a day so that he could stay home with my mum. We were just getting into a routine with him when he died quite suddenly of pneumonia. I would have loved much more time with him to listen to music and laugh together. But I'm also aware his health would have continued to get worse. It was such a massive shock losing him because he wasn't ill for a long time before he died like a lot of other people with Dementia. I wish the doctors had prepared us better, they seem unsure about this disease. I'd like to raise awareness about it and ensure that it gets diagnosed early, has proper treatment and eventually a cure and prevention.
What a beautiful testimony to your mother. I am going through this right now with my 96 year old mom. It is NOT easy... For her or me. I hope I can be strong for a few more years. She is not going to go easy into the night. She is a VERY strong woman. Bless you !
Parkinson’s disease is definitely on the diagnostic continuum with Lewy body disease, so the first neurologist had it partly right. So sorry the ER dr was clueless. I can understand your frustration!!! Thank you so much for sharing!
This was what Robin Williams had, but it wasn't diagnosed until his autopsy. The doctors were amazed he had been able to cope with it for so long. By the time the autopsy results came out, the public had lost interest.
ferociousgumby He was diagnosed as having Parkinson's, initially. Poor guy...not being able to be himself...quick witted...had to be like a living hell for him and others, really :-(
Lewy Bodys can be forming in your body....Robin was still working he would have developed the dementia from it..but he killed himself before that part happened.
Suddenly Simple Idk...if you watch the autopsy/final hours for him, it's obvious his dementia had set in. He was withdrawn, forgetting things and paranoid like crazy. Also not sleeping and very much not himself. With what they attributed to what would have been dementia at that point. His Parkinson's was definitely a mis diagnosis, but he was feeling the dementia. His wife said he would just cry and cry cuz he "wasn't right" and he knew it. Sad
Sadly, the truth is- they cant truly diagnose anyone until after death. The brain is unknown- Robin was young like John and Parkinson's and LBD go together with the Parkinson's not being the dominant disease in my case.
Thank you so much for story about your mom. I am going through this with my mom, who also has DB dementia with parkinsons. She is in hospice care, but we care for mom at home.Mom is 98. She and I talk everyday about whatever she would like and it always comes back to wanting to leave and see her mom again. Mom has a very difficult time speaking but we can usually work out what she wants to say. This illness has actually brought us closer.
Yes, your mother was a brave, resilient person, blessing you and your siblings in how she left till the end, wanting to keep on giving but when not able to ‘correspond’ in the same manner, she was humble and generous enough in just gratefully acknowledge kindness. Yes, that is the importance of living, learning to give and receive love for each other’s and God’s sake. She also blessed me…
I am happy you did this video...Donald Duck sounds very familiar although my Dad saw Mickey Mouse...I thought it was strange they "both" hallucinated about Disney characters. God bless your Mom....and you...Thank you
Everything you said was right on the money. You learned all of those lessons while she was alive. You took very good care of her right up until the end. She was lucky to have you. 👍👏 Don't worry. You will be with her again one day! 😊🙏♥️
Thank you so much for sharing your experience and your Mum’s story. I am in process of trying to find out if my husband has the same condition. Your story really helped me ❤
We are going through an almost identical experience. My mother is entering hospice care tomorrow with what my sister and I firmly believe is Lewy Body Dementia. She has seen numerous neurologists and they’ve diagnosed her with liver toxicity to mild dementia to Alzheimer’s. Nobody said Lewy Body Dementia. When you go to a neurologist and explain that your mother is experiencing hallucinations that she firmly believes are real, like seeing my dead father, or my nephew in a rocker when nobody is there, or picking at her skin till she bleeds because she thinks bugs are embedding into her skin, confining herself to living on her coach, sloth-like movements, paranoid thinking like her neighbor is out to get her or stealing her electricity and hot water, packing the same photos and clothes every night but thinking the maintenance man was coming in and doing it for her, no longer able to sign her name the same way, getting behind in her bills and paperwork, getting into high interest debt because those scumbags prey on the confused. Then the tremors come, and now the sloth-like movements start to become rigid like she’s freezing in ice. A few days can go by and suddenly she can’t hold her head up straight, her neck locked to one side, her left arm no longer responds, her lips tremble, even her tongue, her teeth chatter, her eyes are half open and don’t move side to side, eating becomes difficult and liquids must be thickened in order for her to swallow. And because none of these so-called experts can tell you what the F is going on, in the early stages you are angry with her, “Stop being so paranoid Mom, your neighbor is not running a meth lab. It took us years to get you into this place, and they are going to throw you out. How could you shine a flashlight into your neighbors window and accuse them of tearing down walls to run an illegal business and create an adjoining unit. She’s not even the same woman you accused of the exact same thing a year ago. She’s a different tenant. And Mom, they inspected her unit after your accusations and there is no business, no torn down wall. And you couldn’t possibly have seen them tearing down the wall by peering into an electrical socket. No mom, they are not controlling your microwave. Your microwave is overheating because you are using it as a kitchen timer with nothing in it. They are not controlling your heat. They are not shutting of your refrigerator. It cycles on and off automatically. She’s a nice lady. Why aren’t you friends? She always calls us when she’s worried about you and waters your flowers for you when you’ve been in the hospital. No Mom, stop crying, Dad isn’t cheating on you with a stripper, your marriage isn’t coming to an end. We buried Dad 20 years ago. When he died you were by his side holding his hand. You know that, so how could he be alive and cheating on you? No California has not invented new tech that raises the dead.” And this would go on and on and as her kids, without a proper diagnosis, we’d be angry with her and now I feel so very, very guilty. It wasn’t until my sister saw on TV a report about a famous newscaster that took his own life after learning he had Lewy Body, just like Robin Williams, that we started to research symptoms and our Mom was Lewy Body to a T (And we still can’t get a neurologist to confirm this - What the hell is wrong with these doctors?). With a proper diagnosis, she would have been on the correct antipsychotics, and not one that worsened the disease. We could have planned better, educated ourselves sooner, been more patient and empathetic, explained to her why this was happening to her. She remembers everyone by sight or voice, can still discuss intelligently current events or her medications, even remembers things the doctors forget, yet her most recent diagnosis was Alzheimer’s. So much of her is still in there being locked-in by her condition. She made the decision today that she no longer wants to live like this and articulated such to her hospital staff. Thanks for posting this video. So many of your experiences parallel ours, including your frustrations trying to get the correct diagnosis. Even the bugs! What a heartbreaking disease. Discovered over 100 years ago and not an ounce of progress. And why are so many docs either incapable or unwilling to diagnose this very common and horrible condition based on its unique set of symptoms? If it walks like a duck and quacks like a duck...
@@freddygigliotti7214 I am so sorry, Freddy. It’s a rough ride for the both of you. Now that my Mom is gone, I think of all the things I would have done differently if I had only known. I wish you and your father the best.
My father was healthy never on anything but rolaids daily until he was 78 yrs old. They stopped making rolaids so he started using tums.. (rolaids contains magnesium).. he started hallucinating and was diagnosed with lewy body syndrome dementia. He slid down hill within 4 years and parted away. I would love a study on magnesium and this disease!!!
How about proteolytic enzymes. Caused by a build up of protein. Proteolytic enzymes break down proteins not needed so the body can eliminate them. I’m a HUGE magnesium fan by the way.
I looked after my 85 year old 6ft 2in husband on my own for four years. He had been diagnosed with ALTZIMERS dementia but after hearing this i wonder if he had Lewy body. He was in bed for four years although in the beginning id get him out for a ride in the car. After dementia diagnosis he had a stroke which took ten days to detect, small TIAs. On top of this hed had ulcerated mouth for 15 years had all his teeth removed . The last two years he was on pureed food and vitamin drinks and also suffered skorjens disease, a drying of saliva etc., he'd also suffered rheumatoid arthritis for 60 years. The point im getting to is that he had hallucinations and would see monkies on the window sill, later this became to be a man in the bedroom with a hat on. When i told John to tell it to "go away "he always told me it did. He didn't have tremors until two weeks befoe he died and one night only which is when i got him into hospital as it hadnt happened before. He hever lost his temper, always knew me, but slept most of the time. He didnt behave like all the other dementia patients ive seen on tv. In fact ive been in bed mainly for 5 months because i cant believe he's gone and the absolute stress of trying to ease his mouth pain, in the end i gave him baby bonjela and baby paracetamol as he couldn't swallow opioid and other awful things he was prescribed. Two weeks after hospital and end of life care at home he took his last breath in front of me.
Her daughter is her advocate,...amazing job and so hard to keep going, but love ❤️ always prevails. The emotion of love is not love, caring selfless action is love, and the emotion a byproduct,..a catalyst.
Such a devastatingly cruel disease! robbing the victim, family, friends and colleague of everything in life! A true test of the over all love, support and dedication of family!
Reply I totally agree ,my husband has it,. He started to forget liitle things , but we out that down to age memory loss,he is 72. I kept taking him to the doctors,. They did the memory tests that they all do. Then in January this year,he started getting out of bed walking round the bedroom ,saying there are people trying to get in and harm us. Took him back to the doctors again and again., they gave him sleeping tablets. . They did not help, he used the bedroom as a toilet ,on more than one occasion. He has now been diagnosed with LBD, since march he has deuterated rapidly. Sometimes forgets who I am .and our children's names. The hallucinations are sometimes quite bad, also talking to the to people who are not there I have recently found out a lot of people start with Parkensons symptoms with my husband it seemed to come together . He has a appointment for a PET scan on 1/7/20,but it not going to change the fact he has this horrible illness
My grandma is currently experiencing the gradual decline attributed to lewey body dementia. It’s so hard because she’s someone I can’t even recognize anymore. She used to be so sweet, kind, and thoughtful. She is now irritated, often degrades me, and frequently screams. But I don’t mind it, it makes me more sad than anything else. I’ll bear it for her because I know this isn’t her true character. I know this isn’t how she wanted to live out her last years and her deteriorating brain is currently making her a shell of her former self.
Thank you for sharing this beautiful story of your mother. My sister-in-law (Glenda) was diagnosed with dementia. But we have never gotten a specific diagnosis because she was just 61 y/o and had no health insurance and no money to have all of the appointments with specialists and the tests needed for diagnosis. She has been in an Alzheimer’s locked unit for almost a year. She is now 63 y/o. We also deal with family that are in denial. It’s very sad and so frustrating. In the beginning we were very hopeful that it wasn’t dementia. But we got off of the emotional roller coaster and accept this diagnosis. But I do wish we knew the specific kind. We think it’s frontal temporal dementia. I hate dementia.💔 It’s very cruel.
@@freddygigliotti7214 it’s the hardest thing to deal with isn’t it. make sure you get some time for yourself to have a break even if it’s only a coffee or beer with a mate or a walk round the block. It’s a long hard road to be on really feel for you and anyone else going through it
May I ask why does this seem more common now? My mother in law has the same thing and why are doctors unable to give us answers? So sorry for your loss thank you for sharing your story
Because you need a neurologist which takes 6 months at minimum forbsppt, Everytime we had an appt he got a UTI and they wrote it ofs as uti dementia, we got final diagnosis after I begged the neurologist that I just got the appt for the next day. They gave me one month out and finally we got a diagnosis, 1 month before he died.
My mother (she suffers lewy-.body-dementia) was falsely diagnosed on age schizophrenia and she was given Oxazepam over years - which can even cause diseases like that.
My mother has LBD, but she was NEVER kind or caring to me or my son (her only grandchild). Now, she asks if I love her and tells me she loves me...I find the illness so surreal.
Sorry for your lost so does your family still take part of Lewy Body dementia support group? I know losing someone is very painful experience and just hope you still involve in. I am trying to collect dementia data if you would be able to be part of it. Thanks for your assistance.
Here is a thing.. 12:30 She talks about her loved ones seeing bugs. That's the same "hallucination" another lewy dementia patients had , isnt that a little odd ?
My dad has it. So sad! He is in a nursing home but I really don't think he needs to be. Can I have your email so I can speak privately with you? Thanks, Stacy
Blame the doctors? They are just humans working with what they are presented with. They aren't gods. I understand the frustration but to literally say you blame doctors for not being able to just know what is wrong....sad state of the world to blame the people who spend years and hundres of thousands of dollars to learn and make it their life's work to help.
Plain Jane Agree...but people must realize many neurological diseases are very difficult to diagnose. Like ALS. Then there is usually no treatment or cure so to me being diagnosed is helpful just so you know what condition you have and an answer to what is wrong with me. I was diagnosed today!
I was given the diagnosis today. Not really scared. I do get lost at times while driving and I forget people’s names who are very close to me...at times. And I did punch my wife . The diagnosis is probably correct.
@@I_Art_Laughing you Will be surprised how happy people with dementia can be, to see stuff outside their home. x) memories and stuff. Stupid ass comment.
No. Shame on you for that remark. You must have no idea how much time it takes to care for a loved one with any kind of dementia. It's hard on the entire family; emotionally, financially, socially, etc. Luckily for this family, their beloved mother wasn't combative and out of her mind crazy, which is so common with people that have dementia. Don't be so quick to judge.
What an amazing and strong daughter and woman you are. Your mother was lucky to have you
Such a moving video. My mom suffered with this cruel disease. It turned her into someone I did not know before she died. The most difficult thing we have ever endured. Prayers to you and your family.
For us the same. We care for my Mum since five years (after being diagnosed). It has been very cruelly progressive and made her age unbelievingly in a short time. With the loss of almost any ability. It is so heartbreaking. She always looked 10 yrs younger before that horrible disease hit her. She went dancing with friends, even travelled by herself. We try to hold her - but it is very very hard. Blessing to your family.
I'm 43yrs old and was just given a diagnosis of LBD today. It hasn't really sunk in yet, it's taken my neurologist over a yr to diagnose. I have epilepsy, Crohn's disease, chronic pancreatitis, Trigeminal Nuralga, Addison's disease and gastroparesis. I started having the hallucinations after being hospitalized for bacterial pneumonia in February after having tested positive for A flu.
I'm trying to do as much research as possible so I know what I'm dealing with. Its heartbreaking because I have a 29yr & 10yr old daughter and 2 granddaughters, I haven't told our oldest yet bc it hurts my heart to tell her.
I'm so sorry to hear of your diagnosis, and the many other medical issues. I came across a channel on utube called Molly's Movement or Molly's Mission. It's about a lady that has Louy Body dementia and her wonderful son Joey who documents her journey with this disease. It's a great series and her son is so amazing with her. It's very informative and something you may be interested in watching. I wish the best for you. You are in my thoughts and prayers. May you enjoy the comming holidays. Huggs♡
Heather I hope you are now being blessed with excellent medical & personal care. Much love and many good wishes to you.
Wow! So sorry... praying for you!
Thinking of you,
Heather Leslie you are so young for LBD please consider a second opinion, I hope and pray you do well and live long without too many side effects good luck
You explain this very well. Glad you you were searching for the right treatment for her.
Thank you so much. I was looking around and found this.I will now get my mum to the neurologist, it seems I'm the only one who's noticing.I was moved by you and have now taken some courage from you to help my mum.Best regards from Norfolk, U.K.
I am so sorry for your loss. You are a wonderful daughter and thank you for sharing your wonderful childhood and your mother love. May she rest in peace. God Bless!
This is a lovely and moving video! Thank you for sharing your Mom's story. It's easy to see what a wonderful person she was. God bless you for taking such good care of her!
Thank you very much for your appreciation.
I'm just beginning our story with my mom and this disease. I can totally relate to your feelings about your mother. This is one of the most tasteful and educating videos I have ever watched. Thank you for sharing this.
WOW. I can’t believe how this story is an exact replica of what my mother went through. She too was diagnosed with Lewy Body dementia and passed in 2015. All the stages you’ve described my mother went through as well up until she was bed ridden for the last yr and half of her life.
A beautiful lady. Well done for sharing your story. Keep telling your story as I was totally oblivious to Lewy Body and have recently met a lady who I care for who has it. You put things so well and I can identify with a lot that you said. Thank you.
My mom died from this on December 8 last year. It is truly one of the cruelest diseases our family had to endure.
The only thing that helps is we believe she is in heaven now and can walk again.
I’m truly sorry your family or any family for that matter ever has to deal with this horrendous disease.
Gregory Campbell hey man. My dads suffering from this horrible disease at the moment. I’d love to ask you a few questions. Do you have an email?
Conquest.... the anniversary is coming up. God bless you...it’s so hard to lose your mom.
That was a beautiful tribute. Thank you.
This was wonderfully done! We are going through this currently and I’ve been watching different peoples accounts of their journeys and it’s really helping so I thank you. I just learned about Lewy Body dementia a couple days ago and I think it’s the type my mother in law has I just told my husband and his sister to speak to the doctor to test her to see. Because right now it’s just been the generic “probably dementia “, but that’s not enough in my eyes. Thank you 🙏
Thank you for sharing the celebration of this lady. This gives me comfort when I am coming to terms with the knowledge that my best friend now has this disease, and goodness knows how the next few years will be for him, his wife and their family.
I just lost my mom 18 days ago from so many of the same 4hings you have described. It seems to me that we don't know enough to help our loved ones until it is too late. Mom lived 90 years, mostly healthy, except the last few. Thank you for sharing tour story
Thank you so much for your honesty and openness.
I am sorry for your loss but hope your good memories are vivid and your smiles are big.
Wishing you a Happy and peaceful NewYear from the U.K.
Your Mother taught you well. This was a beautiful yet heart wrenching story you have shared. Prayers.
Thank you for this, dad was just diagnosed last week.
How is your dad doing now?
@@kkdoc7864 He passed away in March. ☹️
@@jamesfishin I’m so sorry
Thank you for sharing your journey. I had an identical 7 year experience with my own mother's illness in the late 80's. Despite being a physician at a university medical center myself, it was a very difficult road, unpredictable, frustrating, and frightening. Almost as if one had to beg for help, care, and direction in enduring the experience. Clearly, you understand the scripture quote "for it is in the fire that gold is tested".
You are gold. You did a great job. No daughter could have done more. Take pride and comfort in the outstanding, loving, caring role you were compelled to fulfill in the long last chapter of a precious soul. God bless.
Jim Klein MD
Thank you for sharing your story. You are in a way lucky that you didn’t lose her totally, that her true lovely essence remained throughout.
God bless you beautiful daughter. You were the sunshine in her life, her advocate, her best friend, and constant. My mother suffers from a cognitive disease Thank you for sharing your mother’s story. I am not alone.
Oh wow. Bless you. I get it since I am a caregiver
My younger brother has this. Thank You for sharing. I know my family is not alone.Thank You
Omg I have a grandmother going through this thank you so much
Thank you for your story! Oh how I miss my Mama!
The tribute to your mother is very loving and informative. Thank you.
Thank you so much for this video. I think every story we hear about Lewy Bodies is different because of what part of the brain is effected. Everyone needs to know that you can only deal with their current state and not assume what the next will be like. It was nice to hear that it is possible to have a loving experience until the end. The lack of a diagnosis is unconscionable, as is the use of the wrong medication. But medical centers don't seem to expect that of their doctors these days. I hope you write them a letter explaining what this does to a person and their family.
Thank you for sharing your Mom’s and your story. She sounds like a very sweet and wonderful lady. God bless you and be with you during all the times you miss her.💙
Thank you this has helped me. My father recently died of Lewy Body Dementia. He'd had mild dementia and mild mobility problems for years but overall seemed well. Then when they implemented the lockdown here, his health rapidly deteriorated because he lost all of his support and activity groups which had been keeping him mentally and physically active and well. His muscles became very stiff and within a few months he could no longer walk. Then he had a stroke. The hospital at that point said they thought he had lewy body dementia but couldn't diagnose it as they couldn't get a clear scan. We had a lovely few months with him at home where we'd listen to his favourite music, sing, talk and laugh. We were all fortunate that he never lost his awareness of his music or his family. I think we were in denial about his illness because he had moments of seeming very lucid and aware. We had carers for him 3 times a day so that he could stay home with my mum. We were just getting into a routine with him when he died quite suddenly of pneumonia. I would have loved much more time with him to listen to music and laugh together. But I'm also aware his health would have continued to get worse. It was such a massive shock losing him because he wasn't ill for a long time before he died like a lot of other people with Dementia. I wish the doctors had prepared us better, they seem unsure about this disease. I'd like to raise awareness about it and ensure that it gets diagnosed early, has proper treatment and eventually a cure and prevention.
I loved your story , Thank you🌸💐🌸
Thank you and so grateful for posting your wonderful mothers journey with us.
Thank you for sharing your story. Nearer the beginning of this with my mom, this is helpful. ❤️
Everyone needs a caring daughter like this woman ! God bless her
Lovely story , thank you
What a beautiful testimony to your mother. I am going through this right now with my 96 year old mom. It is NOT easy... For her or me. I hope I can be strong for a few more years. She is not going to go easy into the night. She is a VERY strong woman. Bless you !
Thank you for sharing i care for my 86yr old mom with dementia .
Parkinson’s disease is definitely on the diagnostic continuum with Lewy body disease, so the first neurologist had it partly right. So sorry the ER dr was clueless. I can understand your frustration!!! Thank you so much for sharing!
This was what Robin Williams had, but it wasn't diagnosed until his autopsy. The doctors were amazed he had been able to cope with it for so long. By the time the autopsy results came out, the public had lost interest.
ferociousgumby Estelle Getty has it as well.
ferociousgumby He was diagnosed as having Parkinson's, initially. Poor guy...not being able to be himself...quick witted...had to be like a living hell for him and others, really :-(
Lewy Bodys can be forming in your body....Robin was still working he would have developed the dementia from it..but he killed himself before that part happened.
Suddenly Simple Idk...if you watch the autopsy/final hours for him, it's obvious his dementia had set in. He was withdrawn, forgetting things and paranoid like crazy. Also not sleeping and very much not himself. With what they attributed to what would have been dementia at that point. His Parkinson's was definitely a mis diagnosis, but he was feeling the dementia. His wife said he would just cry and cry cuz he "wasn't right" and he knew it. Sad
Sadly, the truth is- they cant truly diagnose anyone until after death. The brain is unknown- Robin was young like John and Parkinson's and LBD go together with the Parkinson's not being the dominant disease in my case.
What a Beautiful small documentary. 💜
Thanks for sharing! Caring for my wife with LBD. All the best!
Thank you so much for story about your mom. I am going through this with my mom, who also has DB dementia with parkinsons. She is in hospice care, but we care for mom at home.Mom is 98. She and I talk everyday about whatever she would like and it always comes back to wanting to leave and see her mom again. Mom has a very difficult time speaking but we can usually work out what she wants to say. This illness has actually brought us closer.
Yes, your mother was a brave, resilient person, blessing you and your siblings in how she left till the end, wanting to keep on giving but when not able to ‘correspond’ in the same manner, she was humble and generous enough in just gratefully acknowledge kindness. Yes, that is the importance of living, learning to give and receive love for each other’s and God’s sake. She also blessed me…
What a beautiful story. Your picture of North Hollywood High School I went there in the 9th grade
I am happy you did this video...Donald Duck sounds very familiar although my Dad saw Mickey Mouse...I thought it was strange they "both" hallucinated about Disney characters.
God bless your Mom....and you...Thank you
Thank you- please share
Everything you said was right on the money. You learned all of those lessons while she was alive. You took very good care of her right up until the end. She was lucky to have you. 👍👏 Don't worry. You will be with her again one day! 😊🙏♥️
Thank you so much for sharing your experience and your Mum’s story. I am in process of trying to find out if my husband has the same condition. Your story really helped me ❤
We are going through an almost identical experience. My mother is entering hospice care tomorrow with what my sister and I firmly believe is Lewy Body Dementia. She has seen numerous neurologists and they’ve diagnosed her with liver toxicity to mild dementia to Alzheimer’s. Nobody said Lewy Body Dementia. When you go to a neurologist and explain that your mother is experiencing hallucinations that she firmly believes are real, like seeing my dead father, or my nephew in a rocker when nobody is there, or picking at her skin till she bleeds because she thinks bugs are embedding into her skin, confining herself to living on her coach, sloth-like movements, paranoid thinking like her neighbor is out to get her or stealing her electricity and hot water, packing the same photos and clothes every night but thinking the maintenance man was coming in and doing it for her, no longer able to sign her name the same way, getting behind in her bills and paperwork, getting into high interest debt because those scumbags prey on the confused. Then the tremors come, and now the sloth-like movements start to become rigid like she’s freezing in ice. A few days can go by and suddenly she can’t hold her head up straight, her neck locked to one side, her left arm no longer responds, her lips tremble, even her tongue, her teeth chatter, her eyes are half open and don’t move side to side, eating becomes difficult and liquids must be thickened in order for her to swallow. And because none of these so-called experts can tell you what the F is going on, in the early stages you are angry with her, “Stop being so paranoid Mom, your neighbor is not running a meth lab. It took us years to get you into this place, and they are going to throw you out. How could you shine a flashlight into your neighbors window and accuse them of tearing down walls to run an illegal business and create an adjoining unit. She’s not even the same woman you accused of the exact same thing a year ago. She’s a different tenant. And Mom, they inspected her unit after your accusations and there is no business, no torn down wall. And you couldn’t possibly have seen them tearing down the wall by peering into an electrical socket. No mom, they are not controlling your microwave. Your microwave is overheating because you are using it as a kitchen timer with nothing in it. They are not controlling your heat. They are not shutting of your refrigerator. It cycles on and off automatically. She’s a nice lady. Why aren’t you friends? She always calls us when she’s worried about you and waters your flowers for you when you’ve been in the hospital. No Mom, stop crying, Dad isn’t cheating on you with a stripper, your marriage isn’t coming to an end. We buried Dad 20 years ago. When he died you were by his side holding his hand. You know that, so how could he be alive and cheating on you? No California has not invented new tech that raises the dead.” And this would go on and on and as her kids, without a proper diagnosis, we’d be angry with her and now I feel so very, very guilty. It wasn’t until my sister saw on TV a report about a famous newscaster that took his own life after learning he had Lewy Body, just like Robin Williams, that we started to research symptoms and our Mom was Lewy Body to a T (And we still can’t get a neurologist to confirm this - What the hell is wrong with these doctors?). With a proper diagnosis, she would have been on the correct antipsychotics, and not one that worsened the disease. We could have planned better, educated ourselves sooner, been more patient and empathetic, explained to her why this was happening to her. She remembers everyone by sight or voice, can still discuss intelligently current events or her medications, even remembers things the doctors forget, yet her most recent diagnosis was Alzheimer’s. So much of her is still in there being locked-in by her condition. She made the decision today that she no longer wants to live like this and articulated such to her hospital staff. Thanks for posting this video. So many of your experiences parallel ours, including your frustrations trying to get the correct diagnosis. Even the bugs! What a heartbreaking disease. Discovered over 100 years ago and not an ounce of progress. And why are so many docs either incapable or unwilling to diagnose this very common and horrible condition based on its unique set of symptoms? If it walks like a duck and quacks like a duck...
I teared up reading this.... 🥺❤🥺
Sorry for all you went through. I was a home health nurse for years . I understand you.
I am certain my father has thos also. The Hallucinations are INSANE!!! Dr's. are idiots
@@freddygigliotti7214 I am so sorry, Freddy. It’s a rough ride for the both of you. Now that my Mom is gone, I think of all the things I would have done differently if I had only known. I wish you and your father the best.
My father was healthy never on anything but rolaids daily until he was 78 yrs old. They stopped making rolaids so he started using tums.. (rolaids contains magnesium).. he started hallucinating and was diagnosed with lewy body syndrome dementia. He slid down hill within 4 years and parted away. I would love a study on magnesium and this disease!!!
Go immediately to Prof. Exley from Reed university. Watch his videos. It is 100% sure that aluminium is the cause of dementia.
Milly . Rue Serrapeptase breaks down proteins.
How about proteolytic enzymes. Caused by a build up of protein. Proteolytic enzymes break down proteins not needed so the body can eliminate them. I’m a HUGE magnesium fan by the way.
I looked after my 85 year old 6ft 2in husband on my own for four years. He had been diagnosed with ALTZIMERS dementia but after hearing this i wonder if he had Lewy body. He was in bed for four years although in the beginning id get him out for a ride in the car. After dementia diagnosis he had a stroke which took ten days to detect, small TIAs. On top of this hed had ulcerated mouth for 15 years had all his teeth removed . The last two years he was on pureed food and vitamin drinks and also suffered skorjens disease, a drying of saliva etc., he'd also suffered rheumatoid arthritis for 60 years. The point im getting to is that he had hallucinations and would see monkies on the window sill, later this became to be a man in the bedroom with a hat on. When i told John to tell it to "go away "he always told me it did. He didn't have tremors until two weeks befoe he died and one night only which is when i got him into hospital as it hadnt happened before. He hever lost his temper, always knew me, but slept most of the time. He didnt behave like all the other dementia patients ive seen on tv. In fact ive been in bed mainly for 5 months because i cant believe he's gone and the absolute stress of trying to ease his mouth pain, in the end i gave him baby bonjela and baby paracetamol as he couldn't swallow opioid and other awful things he was prescribed. Two weeks after hospital and end of life care at home he took his last breath in front of me.
Thankyou 🌻
Sorry for your loss 🙏
Her daughter is her advocate,...amazing job and so hard to keep going, but love ❤️ always prevails. The emotion of love is not love, caring selfless action is love, and the emotion a byproduct,..a catalyst.
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Such a devastatingly cruel disease! robbing the victim, family, friends and colleague of everything in life! A true test of the over all love, support and dedication of family!
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I totally agree ,my husband has it,. He started to forget liitle things , but we out that down to age memory loss,he is 72. I kept taking him to the doctors,. They did the memory tests that they all do. Then in January this year,he started getting out of bed walking round the bedroom ,saying there are people trying to get in and harm us. Took him back to the doctors again and again., they gave him sleeping tablets. . They did not help, he used the bedroom as a toilet ,on more than one occasion. He has now been diagnosed with LBD, since march he has deuterated rapidly. Sometimes forgets who I am .and our children's names. The hallucinations are sometimes quite bad, also talking to the to people who are not there I have recently found out a lot of people start with Parkensons symptoms with my husband it seemed to come together . He has a appointment for a PET scan on 1/7/20,but it not going to change the fact he has this horrible illness
@@patjeavons1826 I'm so sorry Pat, 72 is so young to be stru ck with this awful disease! Love to you and your husband 💞
I feel for you. Sorry for your loss.
My grandma is currently experiencing the gradual decline attributed to lewey body dementia. It’s so hard because she’s someone I can’t even recognize anymore. She used to be so sweet, kind, and thoughtful. She is now irritated, often degrades me, and frequently screams. But I don’t mind it, it makes me more sad than anything else. I’ll bear it for her because I know this isn’t her true character. I know this isn’t how she wanted to live out her last years and her deteriorating brain is currently making her a shell of her former self.
Hearing that her mom felt she had nothing to offer,.....that really hit me,...God,...this is so sad,..
Thank you for sharing this beautiful story of your mother.
My sister-in-law (Glenda) was diagnosed with dementia. But we have never gotten a specific diagnosis because she was just 61 y/o and had no health insurance and no money to have all of the appointments with specialists and the tests needed for diagnosis. She has been in an Alzheimer’s locked unit for almost a year. She is now 63 y/o. We also deal with family that are in denial. It’s very sad and so frustrating.
In the beginning we were very hopeful that it wasn’t dementia. But we got off of the emotional roller coaster and accept this diagnosis. But I do wish we knew the specific kind. We think it’s frontal temporal dementia.
I hate dementia.💔 It’s very cruel.
With my dad it was ten years from start to death it was so sad the hallucinations were terrible
I know what you mean. My father sees people in the house and argies with them constantly, and than he gets mad at me because I let them in (I didn't).
@@freddygigliotti7214 it’s the hardest thing to deal with isn’t it. make sure you get some time for yourself to have a break even if it’s only a coffee or beer with a mate or a walk round the block. It’s a long hard road to be on really feel for you and anyone else going through it
May I ask why does this seem more common now? My mother in law has the same thing and why are doctors unable to give us answers? So sorry for your loss thank you for sharing your story
Because you need a neurologist which takes 6 months at minimum forbsppt, Everytime we had an appt he got a UTI and they wrote it ofs as uti dementia, we got final diagnosis after I begged the neurologist that I just got the appt for the next day. They gave me one month out and finally we got a diagnosis, 1 month before he died.
My mother (she suffers lewy-.body-dementia) was falsely diagnosed on age schizophrenia and she was given Oxazepam over years - which can even cause diseases like that.
What about proteolytic enzymes?
My mother has LBD, but she was NEVER kind or caring to me or my son (her only grandchild). Now, she asks if I love her and tells me she loves me...I find the illness so surreal.
What a beautiful woman. She looked like a gentle soul
My grandpa has this.
I wish there was a online support for caregivers/ family of persons with LBD
There are several great Facebook groups specifically for LBD
Does anyone know who made the 70s documentary about a young mans father who slowly deteriorated?. I think it was Ross Mc Elwee but I may be wrong
I wish there was more of a focus in gerontology on fixing the problems instead of just documenting the collapse.
So difficult as a care giver When clearly doctors don’t listen to early signs of distress
My Mother may have been misdiagnosed. I lost her in 2003.
that was very nice what she took from it all at the end
Sorry for your lost so does your family still take part of Lewy Body dementia support group? I know losing someone is very painful experience and just hope you still involve in. I am trying to collect dementia data if you would be able to be part of it. Thanks for your assistance.
Wow...
Here is a thing.. 12:30 She talks about her loved ones seeing bugs. That's the same "hallucination" another lewy dementia patients had , isnt that a little odd ?
Odd how?
My dad has it. So sad! He is in a nursing home but I really don't think he needs to be. Can I have your email so I can speak privately with you? Thanks, Stacy
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My mom tried one dose of Aricept and she had a terrible reaction to it.....
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L)))))l l.p.))l.p. l.p. l.p. l.p. l
Blame the doctors? They are just humans working with what they are presented with. They aren't gods. I understand the frustration but to literally say you blame doctors for not being able to just know what is wrong....sad state of the world to blame the people who spend years and hundres of thousands of dollars to learn and make it their life's work to help.
Plain Jane Agree...but people must realize many neurological diseases are very difficult to diagnose. Like ALS. Then there is usually no treatment or cure so to me being diagnosed is helpful just so you know what condition you have and an answer to what is wrong with me.
I was diagnosed today!
F-ing doctors. It’s still common for many to be dismissive. They’ve harmed more people this way. 😤🤯🤬
I was given the diagnosis today. Not really scared. I do get lost at times while driving and I forget people’s names who are very close to me...at times. And I did punch my wife .
The diagnosis is probably correct.
Was in bed for 4 years, and not leaving her room? You didn't have wheelchairs or what?
To do what? See Donald Duck outside?
@@I_Art_Laughing you Will be surprised how happy people with dementia can be, to see stuff outside their home. x) memories and stuff. Stupid ass comment.
This is what Robin Williams had, but he hadn’t gotten the symptoms much yet. Thi s is why he took his own life.
once a week visit shame on you
James Hanley, judgmental lump aren't you?
Shame on you.
No. Shame on you for that remark. You must have no idea how much time it takes to care for a loved one with any kind of dementia. It's hard on the entire family; emotionally, financially, socially, etc. Luckily for this family, their beloved mother wasn't combative and out of her mind crazy, which is so common with people that have dementia. Don't be so quick to judge.