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This topic is locked, you cannot edit posts or make further replies.  [ 8 posts ] 
 End stage symptoms 
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Joined: Sat Jun 03, 2017 4:31 pm
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Post End stage symptoms
I am interested in knowing more about symptoms of end stage LBD. My husband was diagnosed four years ago, is non-verbal, still has fairly good health, mobile, feeds himself, but sometimes it seems like the end could be near when he decides to sleep most of the day, or seems very depressed, or moves so slowly. I just want him to be as comforable as possible and not experiencing pain that I don't realise he might have. i know each person reacts differently, just looking for common symptoms. He does not have hallucinations or delusions and still seems to recognise those close to us.


Sat Jun 03, 2017 4:38 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: End stage symptoms
caring@home wrote:
I am interested in knowing more about symptoms of end stage LBD. My husband was diagnosed four years ago, is non-verbal, still has fairly good health, mobile, feeds himself, but sometimes it seems like the end could be near when he decides to sleep most of the day, or seems very depressed, or moves so slowly. I just want him to be as comforable as possible and not experiencing pain that I don't realise he might have. i know each person reacts differently, just looking for common symptoms. He does not have hallucinations or delusions and still seems to recognise those close to us.


Greetings. I don't know if this helps but speaking as a patient, expressive aphasia is tough for me so I can see a few years at most I will be in the non-communicative category. That result is predicted only because the aphasia is getting harder now and I can see a point where it becomes so hard to communicate I will decide its just not worth the effort. That will be the natural inclination. Sleep issues are really common with LBD although admittedly from what I have been able to find out, the sleep issues in the beginning are more lack of sleep and the ones nearer the end are a surplus of sleep. Now moving slowly is something else really because over the past 6 months, MY gait and movements have become much slower, my wife expressed concern to the neurologist about it...but can I tell you something from my perspective? When I am walking and moving slow, its not because I have to or am physically constricted or forced to walk that way. Its the brain really and my ability to process information like whats going on around me; this has been greatly retarded. As such, I move slowly because I know from experience if I walk or move normal speed I will trip or walk into something or drop something because I won't see the thing in my path or get distracted and drop what I am carrying, etc. So I go slow, I can process stuff fast enough and react to what I need to at that speed. More self-preservation than direct disability. Does this make sense?

I don't know if this helps at all and please by all thats holy or whatever you need to believe in, consult someone professional. I say that because I am nobody for one thing, every case is a bit different for another but most importantly of all, you are concerned its end-stage and from the sleep symptoms I agree that is possible. However I would also point out the other symptoms that tend to come far earlier in the progression, meaning there is a conflict in using the symptoms to determine progression state. The lack of delusions or hallucinations and other things say earlier. But knowing where you are on that train can be as important as knowing you even have LBD. I have expressive aphasia and physical issues with gait,etc yet in the up cycles I am as much "me" as ever, for the most part, the point being I can engage in life still, I am still me on the inside. I am not "gone" yet even though I walk goofy and can't always express myself.


Sat Jun 03, 2017 10:40 pm
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Joined: Thu Jun 01, 2017 2:28 am
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Post Re: End stage symptoms
Good evening.
First let me say that it's a wonderful thing that your husband can still walk and feed himself and is healthy !! I wish my mother was still able to do those things but I'm just happy she's still healthy. On to your question about end-stage LBD. My mom was diagnosed about 5 years ago. She currently sleeps 90% of the day but has a fairly good appetite and still speaks even though it's slowing down dramatically. From what I've learned from research ( extensive ) and speaking to hospice nurses and multiple doctors, end stage is when they become totally bed-ridden, sleep 20 plus hours a day-everyday, stop eating completely, stop drinking any type liquid completely, appear to be in a coma/type state even though eyes may be open. I'm no expert but it doesn't sound like your husband is at that point. First thing I would do is maybe research the meds your husband is on. Some meds cause drowsiness and need for more sleep . Unfortunately, the majority of doctors haven't got a clue about LBD , therefore, you have to be extremely pro active with everything. Especially medications !!! Initially , my moms doctor had her on Seroquel, Ativan, Excelon. Seroquel and Ativan can be extremely dangerous for LBD patients ! Needless to say- I got that changed within a few days. It nearly killed her. That was over 4 years ago. Now she only takes excelon low dosage . Bottom line- know what it is he's taking- just do a little research.

Wishing you the best , Laura


Sun Jun 04, 2017 2:52 am
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Joined: Sat Jun 03, 2017 4:31 pm
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Post Re: End stage symptoms
Thank you both for your input. I know quite a bit about what's going on with LBD but I'm still like a new mother, very concerned when small changes happen that are hard to decipher, and want to take the best care of him I can. His cognitive is the dominant and his Parkinsonian symptions are secondary. Some days he seems to understand many things fairly well, and some days he cannot fathom what I am trying to communicate to him. He can barely speak somedays and usually just yes, no, I'm OK. Appetite is up and down, can't take any walking for long and 'holds' his legs as if they hurt. I just have to guess at any pain he may have. We just came off of a week from a tooth extraction and a med that I didn't think had codiene, but in fact has synthetic codiene, which can cause some of the same problems with being irregular. I stopped the med and I thought we were past the problem, but for last four days he just wants to stay in bed. He is eating fairly well when he will eat, and drinking a little.

A delicate topic to mention but one that can be so confusing as too what's wrong or what to do is when he starts doing something unusual like looking at his "privates" as if they hurt or something is wrong with them. This has now become an obsession, all day and even during the night. I stay in contact with both his neurologist and regular MD, both are very good and knowledgable, but soemtimes the most helpful info is talking with others that are caregivers for LBD sufferers. I am also part of a support group and also lead a support group but not many are caregivers for LBD. A couple of attendees have experienced recently the death of their loved one but haven't been up to sharing with some of us yet. I really don't think he is end stage but when something unusual happens, it just gets my radar up. When he was diagnosed he was so relieved it wasn't a tumor, but I knew we were in for something much worse and irreversible. It's like he just let out his breath and succumbed to the disease, and let me take over. I guess that's really what is hard for me is being his everything when he was such an indepedent person before, and now I am his total life support and full-time caregiver.

I really do appreciate comments from others, every little bit helps me get through this journey.


Sun Jun 04, 2017 6:17 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: End stage symptoms
caring@home wrote:
Thank you both for your input. I know quite a bit about what's going on with LBD but I'm still like a new mother, very concerned when small changes happen that are hard to decipher, and want to take the best care of him I can. His cognitive is the dominant and his Parkinsonian symptions are secondary. Some days he seems to understand many things fairly well, and some days he cannot fathom what I am trying to communicate to him. He can barely speak somedays and usually just yes, no, I'm OK. Appetite is up and down, can't take any walking for long and 'holds' his legs as if they hurt. I just have to guess at any pain he may have. We just came off of a week from a tooth extraction and a med that I didn't think had codiene, but in fact has synthetic codiene, which can cause some of the same problems with being irregular. I stopped the med and I thought we were past the problem, but for last four days he just wants to stay in bed. He is eating fairly well when he will eat, and drinking a little.

A delicate topic to mention but one that can be so confusing as too what's wrong or what to do is when he starts doing something unusual like looking at his "privates" as if they hurt or something is wrong with them. This has now become an obsession, all day and even during the night. I stay in contact with both his neurologist and regular MD, both are very good and knowledgable, but soemtimes the most helpful info is talking with others that are caregivers for LBD sufferers. I am also part of a support group and also lead a support group but not many are caregivers for LBD. A couple of attendees have experienced recently the death of their loved one but haven't been up to sharing with some of us yet. I really don't think he is end stage but when something unusual happens, it just gets my radar up. When he was diagnosed he was so relieved it wasn't a tumor, but I knew we were in for something much worse and irreversible. It's like he just let out his breath and succumbed to the disease, and let me take over. I guess that's really what is hard for me is being his everything when he was such an indepedent person before, and now I am his total life support and full-time caregiver.

I really do appreciate comments from others, every little bit helps me get through this journey.

Again, I don't mean to speak for all you see but I can agree with the Moment of Diagnosis. Not because it was the big life and death moment, more like for the years of screwy symptoms and negative tests for things just pile up to the point where I was seriously doubting my own sanity because my world was being turned inside out and I could not make anyone understand and no tests seemed to find anything. You begin to see doubt in everyones eyes and after a while, you see it in your eyes as well. I was the Type-A bread-winner, Mr. Independent etc etc, my wife had been 100% disabled for nearly fifteen years when suddenly the roles became reversed over the course of two years and all through it, I had no proof I was experiencing what I was and no doctor seemed to understand. Beth understood best she could but without something else to back me up, lots of what I did was blamed on attitude problems or me acting like a clown when I could not help the Parkinson side of this in public. Then the big moment came, suddenly there was a reason for everything that had been terrorizing me for years and threatened my marriage and wrecked my career and ability to provide. Now at least I had a reason why and at that point, I kinda deflated too. Some of it was just that, deflating from emotional exhaustion. But some of what she and others perceived as me giving up on certain things were in point of fact, things I had been consciously been faking my way through for a long time and if you don't think LBD folks have strategies for this, just ask. But once I got the diagnosis, the need for the well-meaning but still exhausting deception was over and I just let that stuff go. To her though it just seemed like though I was no sicker from the day before to the day I got the diagnosis, all of a sudden all this stuff started going wrong. When in fact I had been covering for a very long time and just could not do it anymore. I am still not sure she understands this but this like many many more things are outside of my control so I don't kill myself worrying about it....


Sun Jun 04, 2017 6:42 pm
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I feel my husband had symptoms too, that only he knew were strange, for about two years prior to diagnosis, and one year before I started keeping notes on some unusual behavior. I thought I should wait til he initiated the conversation about what was going on instead of me bringing it up. This finally happened and gave me the opportunity to ask him some questions about what he felt was going on. At that point he just let me take over--finding a dr. , getting the necessary tests, insurance--he had always handled our joint finances and now he wasn't sure he could. That was the start of explanations for things I had noticed. I don't think that he had really had to consciously work too hard to "cover" and not even sure he completely knew what was going on, except that he occasionally said he couldn't remember things like he previously could, and he could remember everything. He ran a business and had retired a few years earlier, spending several days each week at our farm. When he started to come home after only one night I knew something was up. I later learned when reading up on LBD that when the Parkinsonian symptoms are secondary, the person sometimes has mild tremors 10-15 years prior to an actual diagnosis with very evident problems. This answered a long standing concern that I had for years about a tremor in his right hand. He always dismissed it as related to his BP meds. If only I had even heard about LBD that far back. His cognitive decline has been rapid in my opinion, but again everyone is affected in different ways. The neurologist was a specialist in LBD, even though we didn't know that was what he had, and made the diagnosis very quickly after a few tests.

It's so hard for friends and family to believe he too, had a dementia. I just never even thought of it being part of his life. His parents lived to 80 and 90 with signs of dementia very late, only in last year of their lives.


Sun Jun 04, 2017 10:48 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: End stage symptoms
caring@home wrote:
I feel my husband had symptoms too, that only he knew were strange, for about two years prior to diagnosis, and one year before I started keeping notes on some unusual behavior. I thought I should wait til he initiated the conversation about what was going on instead of me bringing it up. This finally happened and gave me the opportunity to ask him some questions about what he felt was going on. At that point he just let me take over--finding a dr. , getting the necessary tests, insurance--he had always handled our joint finances and now he wasn't sure he could. That was the start of explanations for things I had noticed. I don't think that he had really had to consciously work too hard to "cover" and not even sure he completely knew what was going on, except that he occasionally said he couldn't remember things like he previously could, and he could remember everything. He ran a business and had retired a few years earlier, spending several days each week at our farm. When he started to come home after only one night I knew something was up. I later learned when reading up on LBD that when the Parkinsonian symptoms are secondary, the person sometimes has mild tremors 10-15 years prior to an actual diagnosis with very evident problems. This answered a long standing concern that I had for years about a tremor in his right hand. He always dismissed it as related to his BP meds. If only I had even heard about LBD that far back. His cognitive decline has been rapid in my opinion, but again everyone is affected in different ways. The neurologist was a specialist in LBD, even though we didn't know that was what he had, and made the diagnosis very quickly after a few tests.

It's so hard for friends and family to believe he too, had a dementia. I just never even thought of it being part of his life. His parents lived to 80 and 90 with signs of dementia very late, only in last year of their lives.

Caring; see what I wrote about LBD diagnosis coming down to just four or five minutes (read: just a few of the right tests) vs the time we spend/waste getting there.

The friends and family not grasping reminds me of a situation I had very very often and it drove me crazy to the point where I just gave up dealing with family like that. I know its heinous to say but this place is about truth....and it happened so many times that I would get around someone who thought they knew me well, we would interact, etc and they would come away telling everyone I was just fine and I would come away thinking WTF were they thinking? My words were freaking nonsense! I could barely hold onto stuff....so enough of that disconnect happens and I realized the folks who came to see ME realized things were off almost immediately but the folks who came to see a memory of me, thats all they see, the memory and unless I pee in their inbasket, that illusion is maintained. Enough of that happens and you realize you have less and less in common with the world they inhabit.


Mon Jun 05, 2017 8:20 am
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Joined: Mon Sep 11, 2017 8:59 am
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Post Re: End stage symptoms
Hello Caring,

My father just passed a week ago and I can tell you that as long as your husband is still mobile, eating, drinking, and communicating, he's most likely nowhere near the end stages. Unfortunately, it gets much worse. My Dad was finally diagnosed in 2009, but was showing symptoms for about 5 years prior. He became completely bedridden in January of 2016. We called in hospice and they were a godsend for my mother who was his primary caregiver. I know hospice sounds scary, but they provided everything that Dad could possibly need, medications, supplies, etc. Even bedridden, he still read for a few months (until the comprehension completely went) and would still watch TV. His communication skills were already little to none, but we could get a word or two out if we were patient. He ate 3 square meals a day and drank. A few months ago, he stopped eating as much and slowed drinking...he had a hard time swallowing, but was still in good health. Strong heart, no congestion in the lungs. On the 21st of August he stopped eating, just like that. Spiked a bit of a fever that night which we controlled, but he wouldn't eat anything, it just sat in his mouth. Last weekend, on Sept. 1st, he stopped drinking. He passed at home on Monday the 4th.

The best advice I can give is keep him moving as much as possible and try to keep his mind engaged. The medication for the Parkinsonism (Carbidopa) will make them sleepy and can cause more hallucinations, but it also keeps them moving. Thickening his drinks will also help with the swallowing. They make this stuff called Thick-it...worked for dad. Good Luck!


Mon Sep 11, 2017 9:20 am
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