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 QUESTION: Late/End-stage LBD symptoms 
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Joined: Mon Jul 09, 2007 9:03 pm
Posts: 2
Location: Massachusetts
Post QUESTION: Late/End-stage LBD symptoms
My husband has LBD, REM behavior disorder, and apnea. LBD siagnosed Feb. 2003. He has a particularly pronounced startle response most of the time but on occasion his arms and upper body seem to jerk involuntarily, he's feeble with very poor balance.

Today he had such an episode, eyes wide open, couldn't walk and couldn't sit straight on a chair... had to strap him to keep him from falling off. I couldn't tell for sure if he was having a seizure or not. What I saw also didn't appear to be REM-BD arm-thrashing either. That usually happens when he's clearly asleep.

Has anyone else observed similar symptoms?

I'd like to learn more about late/end stage characteristics and caregiver issues.

Cathy Thomas


Mon Jul 09, 2007 11:57 pm
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
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I also would like to learn about late/end stage LBD issues. The GP told me the other day that I might be starting to look for an institution for PE in two years. This was in answer to my questions about financial issues. Somehow I feel this is much too short, but I can see that we are moving into another phase of LBD, and of course I agree with Cathy that if we could have advice on this particular subject, it would help a lot. Dinny Wolff


Tue Jul 10, 2007 3:53 am
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Cathy:

We were having similar problems with Cal, our LO with DLB, until he got on psychostimulant therapy - it was particularly deep, unarousable sleep, with respiration and heart rate dropping like he was *way* asleep.

Adding Provigil to his regimen made all the difference - ask your husband's neurologist about it at once, and if he's not familiar with its use in DLB, refer him to the publications of Dr. Bradley Boeve of the Mayo Clinic. Search here - I'm a huge advocate of this approach - it's been a lifesaver for Cal - people thought he was having TIAs and partial-absence seizures, when it was really just sleep attacks.

E

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Jul 10, 2007 3:04 pm
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Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
Post Late catatonic state
My husband has had LBD for at least 6 years and I think more like 8 in retrospect. The past months he has had many many seizures. He didn't always close his eyes during them, just stare and passout. The last several weeks, he keeps his eyes closed, even if sitting, and if I can get him to speak, it is always so weak or quiet that I can't hear him.
Like today, I went to the nursing home to see him. He was laying across the bed, his eyes closed, and his mouth partly open and his lower lip would go in and out with his breathing. He was white, waxey looking.
The alarm didn't wake him, I turned off the alarm and tried to wake him. I talked to him, and touched his face. He seemed annoyed by my light touch. He finally opened his eyes only to tiny slits and said a word that I couldn't possibly hear.
I stayed a while, but my tears came, and I left. They took him off his memory meds, only on heart med. What can I expect next??? It is so hard, I am so glad to have you people with me.
Thank You, Elaine

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Husband 78, In Late Stages of LBD


Fri Aug 10, 2007 8:22 pm
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Dear Elaine,
I am sorry that your husband's decline has come to this, there really is no true time frame, you don't say if he is still taking food and drinks, What has the NH said is their opinion. :(


Fri Aug 10, 2007 8:54 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Elaine,

Some ideas about what this could be:
* in a state between sleep and wakefulness (perhaps he's not getting sufficient sleep each day/night)
* extreme fatigue (an indication he needs more rest)
* withdrawing before he dies (seems unlikely)

I encourage you to speak with his MD about this. And adopt a somewhat contradictory view of this -- aggressively fight it with the help of the MD but accept in front of your husband as just a natural part of his life. Being upset about things probably doesn't do him any good. Sorry to be blunt. I know that when I have bemoaned my father's decline or situation in front of him (clinical DX of PSP), he is very upset by this.

You mention in your post that he's had LBD for 6-8 years yet your signature says he has "early onset."

Robin


Sat Aug 11, 2007 12:40 am
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Joined: Thu Jan 11, 2007 1:03 pm
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Location: Wisconsin
Post Late Behavior
Hi Robin, Thanks for the reply. Fortunately we, have three different specialists working together to try to figure out what is wrong. They all finally agreed that it is seizures brought on by LBD. They have him on as little meds as they feel are beneficial, you never know what a new one will do to them. He has tried so very many in these 6 years.

In his state yesterday, he had no idea that my tears seeped out. I know what you mean about tears upsetting them. He saw me cry once early on, and he did get upset, probably thought he did something.... I learned then to keep my grief to myself.

When I joined this group and said "Early Onset" I meant, as the doctors mentioned, it was at an early stage in HIS life, not that he is now early onset. Now it has been a long road for him as well as our family.

Thanks again, it is so nice to know that people like you are there to listen, it helps a lot,
Elaine

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Husband 78, In Late Stages of LBD


Sat Aug 11, 2007 9:10 am
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Joined: Thu Jan 11, 2007 1:03 pm
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Location: Wisconsin
Post Eyes closed but not alseep
My husband keeps his eyes closed day and night. When I talk to him he doesn't respond in any way. The nurses have tried to get him to open his eyes to no avail. Today a neighbor went to visit just after his lunch and he said "Hi Joe, sit down" I would give anything to hear that. Has anyone else ever experienced this kind of behavior from their LBD patient. It made me feel that he doesn't want to see me, which I know is not the case. I hope! Just wondering.

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Husband 78, In Late Stages of LBD


Sun Aug 19, 2007 2:54 pm
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Joined: Fri Feb 16, 2007 6:13 pm
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Location: Fayetteville, AR
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I had a similar experience as your husband. I posted about it recently in a post titled "conscious seizures" I think. My neurologist said it was a seizure.


Randy


Sun Aug 19, 2007 4:46 pm
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Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
Post closed eyes
Thanks for the reply, I'm so sorry that you are suffering the disease. I am wondering if you meant that all the while he has his eyes closed he is in seizure? It really is puzzling. He hasn't been alert for me for ages, then today my neighbor went to visit him and he said "Hi Joe, have a seat!" I am going to try again tomorrow at a meal time and "see" if I can see him again.
Thanks again
Elaine

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Husband 78, In Late Stages of LBD


Sun Aug 19, 2007 6:01 pm
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