New Diagnosis for Husband. He was diagnosed a year ago with dementia, probably Frontal Temporal Dementia. After a year, some of his behaviors have changed, and after re-testing recentlty was re-diagnosed with Lewy Body Dementia.
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.
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").
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 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.
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!
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.
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
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!)
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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
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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.
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
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
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!)
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