Does anyone else have experience with Lewy Body?

6 years ago I was diagnosed with FTD. Had lots of memory problems, identifying objects, temper started getting short (always been a very patient gentlemen, as my mother raised me to be), easily distracted, etc., etc., etc., Dr. showed us on CT how much atrophy I had in frontal and right temporal area. Exelon, namenda and xanax prescribed. ..

Two or three years later (I no longer have concept of time--right now, to me, it's Sunday afternoon, sometime in May, 1940, which is before I was born) I began to hallucinate and misperceive what I was seeing (eg, I saw a barrel in a neighbors yard and through it was a little boy), started 'pill rolling', generally in response to anxiety. My neurologist referred me to a psychiatrist for possible LBD. Now I regularly see small animals dart about the house and people moving, especially in shadows (for awhile I had a regular friend who was dressed in Bristish Revolutionary War red coat with white wig, white shirt with ruffled collar, blue pants, but no face or feet; frequently stood looking over my shoulder, never spoke; last saw him standing behind my psychiatrist, just standing there).

Usually if I look directly at what I see it goes away. I also key off reactions of my wife and our dog--if they don't react, I know its me and don't worry about it. Sometimes, they're entertaining, sometimes distracting, sometimes (especially if shadowy figures) frightening. My neurologist once suggested I take out a subscription.

A bigger distraction, and annoyance, is I also have auditory hallucinations. Usually one or two male voices, sometimes a female addition or just the female, usually just talking, sometimes arguing, occasionally there is music. It's kind of like a tv or talk radio turned down low in another room. Lately the voices have been waking me up. When it's night, a little noise is created by the wind, the voices are chit chatting and something moves in the shadows, it's frightening. Twice I've gotten up to check the house, although my wife and dog were asleep, and once I wanted to leave to try to get away from the voices.
I also act out dreams. Couple of nights ago my wife woke me cause I was hitting her (in my dream I was fighting three teen age bullies)--didn't hurt her, but it worries me..

Worst of all (and I'm meeting with my psychiatrist this afternoon on this one), I have begun not recognizing my loved ones (e.g., visually saw my 33 year old son as himself, cognitively he was supposed to be a teenager; also visually didn't know my wife or grandaughter, though cognitively I did know them).

Really concerns me when Uncle Lewy and Cousin FT both decide to visit at the same time as they seem to feed off each other. A couple of nights ago my wife was trying to discuss a business opportunity with me, I became frustrated trying to use the tv remote so I could pay attention to her, she saw how I was becoming so she went to take a bath. I continued (FTD), finally turning frustration, into anger, into all out rage. I took an extra xanax and went for a walk (at least I still recognize what is going on and know a few counter measures). After walking about 1/4 mile (10PM), I stood outside until the xanax kicked in and I felt safe about going in the house. In the meantime, If I'd had a baseball bat I would have taken on our carport, and I watched some guy run back and forth between our parked cars (LBD). Went in and straight to bed. I now have major concerns about what could happen, expecially if my wife or grandchildren are there and I can't control my anger or the impulses. Med adjustment time (I hope)

Anyway, not meaning to scare you, just answering your question. Most days are calm--no short term memory, unable to multitask, no autopilot (have to talk, sometimes outloud, just to make my coffee), highly distractable, no concept of time, losing orientation, often don't know people or where I am or have been (I've learned to fake it to keep my wife happy, which probably isn't fare to her), and in the last 2-3 weeks my balance and equilibrium have been going downhill, my lower back and right hip and thigh are very stiff, and I often have to make myself do things involving muscular activity, including walking and getting in and out of the car (I prefer to stay home, in my recliner in my den, with our dachsund). As a rule, other than maybe a few physcial problems, you'd never know what's going on inside of me.

Best wishing to both of you. God bless you on this long roller coaster ride

It is amazing you can write so lucidly considering what is happening to you. Thank you for sharing your experience. I have never read a description of the experience of dementia from the point of view of the person going through it. Blessings to you. You are a remarkable man.

Thank you. A great piece of writing. Very helpful.

My Mom had LBD. We knew because she started hallucinating and hearing voices. Put her on Medication, and she was doing better. My mother would sort of forget how to walk, and she would fall a lot. I was afraid for her. So, we put her in a home where she had her own room and stayed in her wheelchair. She could not remember anything, at all, so when I talked to her I didn't have any conversations with her where she would have to remember. It was taking her mind. She started sleeping all the time, she was leaving us. My Mom was 90 years old when she passed away, so I can't say how much was the LBD and how much was old age. I am just glad she is at peace now.

God bless you sweet man. Simply amazing your ability to convey vivid and deep thoughts as you recognize what's going on in both worlds. Thank you for this insight.

Did you have someone write and verbalized this for you? It seems the stage of your disease would not permit you to be able to have written this.

Skizzie I would be pretty certain that Mrranch2 wrote this himself. I don't know about his other dementia but I can assure you that LBD is strange in what it takes away, leaves you with and adds to you. This is purely from my experience, but I do know that when I'm not losing my words (this seems to happen if I'm asked a direct question "what are we doing now? Where are you going?) I can be extremely descriptive and lucid about what is going on in my head.
I have auditory, visual hallucinations and also ones that smell (rarely of anything good). I "know" when/where things are because calendar/friends say for example "now" is Feb 23rd 2016, but for me it's July 21st 1957 and why is it so da*ned cold? I can hear people talking but my dogs sleeping so can't be anyone there + my long dead mother is standing by the door I'm not making her a drink even if it is cold.
LBD is not a like other dementia, you can in 1/2 hour be really out of it and as lucid as Martin Luther King

My husband had LBD, the one dementia that is most confused for others. That's a real problem, as people with LBD can be VERY sensitive to medications, especially ones like anti-psychotics. For lots of information, check out the lbda.org website files, or their caregivers' forum. Good luck.

My mother had LBD. She saw friends, relatives, her long deceased parents, people she worked with 40 years ago. Celebrities from TV shows (she watched Real Housewives and the Kardashians for hours every day), and little kids. There was always 'someone sleeping in the back bedroom'. If the bedroom door happened to be closed, she would tiptoe around so as not to wake them up. My dear deceased grandmother (her m-i-l) was coming and going from the house and mom fretted endlessly over how she was getting around without a car. (her paid caregiver always assured mom she had 'seen' grandma leave the house and get into a car on the street.) My father, long dead of course, was coming and going in the house in the middle of the night but wouldn't talk to her. She would fix him (and my brothers, also long gone), sandwiches or some kind of food cobbled together from the freezer and put it in the refrigerator for them to eat (which I threw out when it got rotten in a week). I'd get calls in the middle of the night or at dawn, she's whisper she was sitting in the hallway so as not to wake 'them' up, and the 'little kids' had been running around all night....That was the hallucination part, quite creepy and disturbing in a funny way! No use in arguing, I would just smile and nod or make up something comforting, that grandma had called me and said she was back home.

My mom was diagnosed about three years ago. Unfortunately, LBD cannot be truly confirmed until after death and if an autopsy of the brain is performed. However, my mom had been showing signs of declining memory, which should would not face or accept. She just attributed it to getting older. However, the real turning point was when I received a call from a family friend (I had moved out of state) that my mom said that she was seeing small people in her apartment. Her hallucinations are alarming to her. They initially appeared as small children and animals, all over her apartment. She would see "things" on are under the lampshades, around electrical outlets etc. She also started seeing dead relatives in her room. At times she did not remember that they were deceased. She became so fearful that she would leave her apartment in the middle of the night, which of course was very dangerous. Luckily, she was in an area where everything was at your fingertips. There was a Rite Aid drug store across the street and she went there to report someone in her apartment. They had my phone number and called me. I asked them to hold her there while I called 911 to have her taken to the hospital. She's now on medication: Excelon, Seroquel and another med I can't think of right now. She's improved, but still has periods of hallucinations. It doesn't help that she also has cataracts so I don't know if she's actually "seeing things" sometimes or whether her vision is distorted because of the cataracts. Wishing you and your husband the best. Feel free to ask any other questions.

I also have MPD/DID which can be a problem as one of my "internal Littles" insists that our pink suede boots are "kinky boots" and they are sleeping. Now when she says this I see very strappy, spangly sandals on 6" heels cavorting around my flat :~)
I too see long dead relatives, sadly the perperatrators of my abuse, so really distressing.
I agree with Kathyti about the sensitivity to drugs, I have to be extremely careful what I have. Given a cornucopia of physical problems this can be a nightmare.
Lassie, your post made me smile as I get similar calls from my BIL who has a different dementia, he gets very concerned about his late Mum getting home safely when she's been over making him ham & pea soup at 4.30 am!
NYC2015, when people ask me if I'm positive I have LBD I tell them it can only be confirmed by autopsy. But that given I have all the classic text book symptoms, I think it's safe to say "yes" I have it. It must be so hard having cataracts and visual hallucinations too your Mom and you have my empathy/sympathy

My husband has Lewy Body Dementia (6 years now) though the symptoms started showing up a few years before that. The gentleman who wrote about what he is going through is faring far better than my husband if he wrote this himself. My hubby has lost his ability to read much--he can still read cartoons but other articles in newspaper it is just too difficult. He can no longer write. His ability to speak is diminishing as he cannot find the right words...most of our conversations I just nod my head (which seems to work) or ask him to repeat to see if I can get a better feel for what he is trying to say. He is/was a pharmacist and can no longer figure out which medicines to take at which times--I have been managing his meds for two years now. He cannot drive, his ability to walk is still intact, but he gets dizzy sometimes so I have to walk with him. He does not know who I am most of the time...there are usually 3 or 4 other ladies present all the time...coming and going in our house (it is just me). He has REM sleep disorder so acts out his dreams and also talks in his sleep. This disease is horrible and I can only say to those who are dealing with it that prayer is the #1 help. All who suffer with Lewy are in my prayers.

Y'all are absolutely on target with your descriptions of LBD and what it does. FTD is Frontal-Temporal Dementia, my initial diagnosis. It involves the frontal and temporal lobes of the brain and effects executive function (decision making, judgement, etc.) as well as patience, control of anger and other emotions, impulsivity, etc. LBD adds hallucinations, confusion, orientation, balance and motor problems, etc. I like to refer to them as (Uncle) Lewy (Lewy Body Dementia), (cousin) FT (Fronal-temporal Dementia), and their friends Al (Alzheimers) and Dr. D (all the other dementias).

A psychologist recently explained to me that my problems seem to be a result of the damage to my brain being where the two generally affected areas (LBD and FTD) come together.

By the way, Skizzie, I did indeed write the post and am writing this as well. Sometimes it takes awhile, sometimes it doesn't, and I always re-read and edit several times, as well as spell check before posting (my old elementary school teachers and one particular high school english teacher would be particularly proud that something they tried to teach me actually 'stuck'). The one part of me that seems pretty well intact is, for some reason, my expressive language skills. I do lose words, substitute words, have trouble identifying objects, etc., incorrectly spell a lot of times, and am finding my use of keyboards of any size is really becoming problematic (it has been good since a typing class in 1958, now my fingers seem to sometime forget where the correct keys are and just take off on their own).
I have several friends on other webpages, all who have LBD or Alzheimers, who are quite articulate, though I have never asked how much of a problem they have putting things on paper.

I think the most frustrating part of LBD, for me, is it's unpredictability. As LucyCW described, things can be "normal" one minute, the next somewhere in the twilight zone and a few minutes later better than in the beginning.
For example: I quit driving 5 years ago (fear of traffic and of getting lost), but we live in the country and there is a convenience store about a mile or so down the road so I will occasionally drive there for milk, bread, etc. (NEVER the interstate, and into town only if ABSOLUTELY necessary--MAYBE two or three times a year).
Yesterday I went to get some coke, chips and bread. When I left the house I was as fine as I ever am. About halfway to the store I knew Lewy and FT had hitched a ride when the store was not where my mind said it was supposed to be. Being the fiercely independent west Texan I have always been, instead of turning back I 'soldiered on'.
When I got out of the car my balance and equilibrium were not good (LBD), they were fine when I left. I carefully worked my way through the small aisles, got what was on my wife's list, and went to checkout. There were four oil field workers in line who could not get their cards to work, and one who did not know how to count his money. The clerk, a middle aged lady, was patient but had an annoying nasal laugh and called everybody "Hun." FTD jumped in and my patience rapidly began disappearing, in spite of my meds. I literally talked myself into staying calm.
At the register my items were scanned, the clerk told me the total, I reached in my pocket for my $20 bill, and gave her my wife's shopping list! At first I was shocked that she gave it back to me instead of giving me my change, then again told me the total. I mumbled an apology (I think), found the $20, got my change and purchases and went outside, still talking my way through the processes.
At the car, I put everything in the driver's seat, then I could not figure out how to get in the car! I finally leaned in, put everything in the passenger seat, then stood next to the car trying to figure out how to get myself in there (I'm 6'2, 290 lbs; the car is a Subaru Outback, a small SUV; I have to scrunch to get in and out anyway). Problem was, I could not remember how to get in the car! I finally figured it out, talked my way through, step by step, and carefully drove home. 15 or 20 minutes or so after getting home, I was sitting in my recliner, and 'normal' returned.

Such is life with LBD--totally unpredictable, highly frustrating, but always interesting (in restrospect andywy--Skizzie I left that unedited so you could see the typing problems; it should read "in retrospect anyway").

Enjoy the ride--and NEVER give up.

My father has dementia and I do know that everyday is a totally different day. He may seem completely normal one day and the next not know who I am and ranting and raving. My father as macular degeneration and I wonder the same thing NYC. Maybe he just can't see me and that might be the reason for a lot of the confusion. I am at my wits end........my life is a roller coaster.

God bless and help all with this horrific disease. I may very well get there myself someday in the not too far future.... Mrranch2, I enjoy your postings, but seriously, even if you are a macho man who never gives up, the time is coming when your family will have to take your keys away for the safety of other drivers, and of course yourself. Please give some thought to this. No one wants to be mean or treat you badly. In your lucid moments....they are going to get fewer. My mother had LBD and I was certain she could drive safely, in the afternoon, a mile down the road to the grocery store, to the dollar store, to a fast food place. She didn't. She set out for those places and ended up 100 miles from home. She couldn't tell day from night and drove to church for 5:00 mass - at 5 a.m. Every night for 2 weeks. Got lost coming home, a 2 mile trip.... Public safety trumps all.

My husband was diagnosed with RBD when it was considered "the Minnesota disease" (because it was identified here and treatment for it started here). The treatment is simple and effective. I urge anyone who acts out their dreams at night (with or without dementia) to seek treatment. It works! (REM sleep Behavior Disorder.)

Because he was diagnosed at a research center, they kept track of him with full neurological work-ups every 18 months. They suspected the sleep disorder might be related to Parkinson's and they were vigilantly following their patients.

In May of 2003 the summary of his test results was "normal for a man his age." In June he had a complete meltdown which his PCP and the ER diagnosed as "dementia." When I contacted his sleep psychiatrist for advice on new night issues he gave us the diagnosis over the phone -- Lewy Body Dementia -- and a referral to a Mayo Clinic specialty research unit.

We lived with Lewy for ten years. So far it can only be confirmed with brain autopsy (although there is much effort going on to identify it in other ways). His autopsy confirmed the protein masses ("bodies") throughout his brain. As strong a case as his doctor has ever seen. He definitely had LBD and no other kind of dementia.

Mrranch2's account sounds very authentic! From the outside, what he describes is what my husband's disease looked like. Many people had a hard time accepting that he was mentally impaired, especially because he was so good at showtiming.

We referred to his disease as Lewy and personified it. "Yes, honey, you can carry your own tray perfectly well if Lewy doesn't interfere. But since we never know when he'll show up, why don't you find us a nice table and I'll pay can bring your tray."

LBD is known as the "roller coaster" dementia because of the sudden ups and downs, but my dear husband, Coy, had the "pogo stick" dementia for long periods when the ups and downs were very rapid in succession.

It is great to have periods of lucidity when things could be "normal" and we could discuss things such as end-of-life wishes. But good-and-bad fluctuations can be challenging. I heard of a case where a guy with LBD was in a facility that had never heard of it. They thought he was faking his bad symptoms! He could do that thing in the morning and now in the afternoon he was pretending he couldn't do it, for attention. NO! The disease really does fluctuate A LOT and my heart goes out to anyone with LBD who is accused of faking symptoms for attention!

The bad news about LBD is that behavioral issues start very early. Often hallucinations are the first noticeable symptom. Delusions are common and early. The "caregiver burden" (they actually measure such things) is higher than many other forms of dementia because there is so much to deal with so soon. You don't get years to get used to it! Coy's worst year was the first one, then he plateaued at a moderate level for about 8 years, and his last year was worse, mostly with physical symptoms.

The good news is that treatment for various symptoms may be more effective than in other dementia types. There is less brain cell death and more opportunity for the brain to build some alternate pathways. It definitely gets worse over time, as all progressive dementias do, but there can be some good symptom relief along the way, if you are seeing a medical team that truly understands the unique properties of this disease.

Mrranach2 is obviously a very verbal and articulate person. I am so pleased to see that he is retaining that! (I'm willing to bet he has more trouble with it on some days than on others, and that it takes much longer to produce a coherent written communication than it used to.) Coy was intelligent and well educated. He was an engineer. But he was not as articulate as Mrranch even before the dementia, so I wouldn't have expected something like Mrranch's posts from him.

Coy donated his brain for dementia and sleep disorder research. It meant a lot to him to think he could perhaps make a contribution to treatments an cures.

Alexander4, Coy and Mrranch had this in common: They both understand/understood the nature of their disease and could talk openly about it. I think this is a huge asset if it is possible. Coy didn't want all the technical details but he was very relieved to know that there was a medical reason for his problems. (Engineers believe strongly in cause-and-effect!) It took about a year, but when he finally relaxed and accepted that his need for help was not his fault, we could work together more effectively.

Each person is different, but if your husband can accept his disease, don't shy away from talking about it.+

God bless Coy, who wanted to donate his brain. Such a terrible disease, for the patient and the family and caregivers.

I am so amazed to see that some people with LBD are still so vibrant and articulate! That is wonderful! Unfortunately, my mom has been and still is in denial about her LBD. She has a very limited ability to "find her words" on most days and definitely uses the wrong word to describe objects a lot. She does have the gait issue that is associated with Parkinsons and now uses a walker. I moved her out of NY to an assisted living facility near me in VA. Her decline has been moderate, and I am thankful for that. She still bathes and dresses herself, gets her hair and nails done weekly and still applies makeup daily. When she was still in NY, I hired an aide that came daily, but it was not enough. Otherwise, she was isolated. I signed her up for an adult center that picked her up a few times a week. But she complained about being around too many old people. ;-) SMH.

It is so sad yet so helpful to read of people's experiences of LBD as sufferers, carers but in all cases livers with.
I'm in complete agreement with Mrranch 2 about it taking various degrees of time to write coherently and the need to spell check everything (sometimes twice if you're in UK or just don't believe your spell checker :~)
I've not got round to naming my LBD though my stomach ulcer is Ernst and we've been together over 20 yrs now, my Barrett's esophagus is Raoul we've been together for 3 years, and my Fibromyalgia is Florence or Flo. It does help being able to tell folk close to me that it's one of these characters causing issues.
I've been a writer since I was a small child and I am finding that harder to do. The other day I read something and remarked to a good friend "hey, this is good, this author really knows how to write. You're right there feeling what they're saying." My friends response totally threw me, "I know, you wrote it." I would have sworn on a stack of bibles that I'd never read this, let alone wrote it 6 months ago!
Thanks Jean for the advice re Rem sleep, I'm def acting out my dreams. What's spooky is that my "sleeping" body does things my waking body is to disabled to do! This at least explains bruises and injuries that I couldn't otherwise explain.
Take care all of you, wherever you are.

Wow, MrRanch2, your posts are amazing! Thank you so much for sharing what it's like to live with two forms of dementia. You are so vivid in your descriptions. Thank you for sharing your life with the rest of us caregivers - you have given us all a gift.

Thank you for this thread.

My 90 yr old dad fell and hit his head last year on a dresser. In the last 6 mos he tells me there are people in his house, animals that lie on the chair, forms that take shape of the furniture, thinks his house has levels, (it's a ranch). They don't have heads or faces, they don't talk they are just there. I've listened and agreed with him to make him feel better, even told him to show them the door and push them out. We are turning on all the lights so there are no shadows and that usually helps. When he sees something he thinks is there, I take a pic of it and show him here is nothing there. What else can I do?

Perkins, does Dad have a diagnosis of LBD? Hallucinations and delusions are very common early in LBD, but of course they appear in other conditions as well.

In LBD these experiences are often (not always) benign. Then there is no need to deal with them at all. If they are not particularly bothersome to the person having them, do nothing, except perhaps comment that that seems interesting when they tell you.

I understand the urge to take a picture and "prove" that the hallucination is not there. The problem with that approach is it is based on logic. Logic has no power over delusions. I remember how hard I tried to convince my husband that our living room was not a train depot. I pointed out objects that were wedding presents and told him who gave them to us. I showed him the shelf of photo albums with us in them. I reminded him how the carpet came to be stained right there. I was very convincing. And even though he agreed that was our picture and we got that for our wedding. he still believed our living room was a train depot and he was waiting for a train to go home. I'm sure taking photos wouldn't have made any impact. What is Father's reaction when you show him the photos? Does it calm him down? Does it prevent reassurances? (I kept repeating the same dumb behaviors not noticing that they didn't work!)

Lol, my mother used to say 'your father is taking food out of the refrigerator' or 'is sleeping in the basement'. I would say, 'don't you remember when dad DIED 20 years ago, the funeral, the relatives from out of town coming up?'....and I'd get an outraged look, 'well, of COURSE I remember that. But your dad is still here in the house!' Lol! Talk till you're blue in the face. Their brains are whacked.

I have read everything I can get my hands on about Lewy Body dementia the past couple years. Nothing has been as helpful as what I've read in this thread. Some of the descriptions are identical to the baffling, variable behavior my Mom with advanced Parkinsons has. I am so grateful to this website! I would be way more insane without all of you. Thank you!