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 Sleep Disorders as Possible First Symptoms of LBD 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
It is my understanding that Lewy bodies can show up in just about any part of the brain. The hypothalamus, which regulates sleep, is also responsible for many other autonomic nervous system functions and is often affected by Lewy.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 22, 2011 11:34 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Once lodged there, do the Lewy bodies stay in that place? Dale's mobility is such that he needs to be pulled out of bed in morning ... but later, he can get up all by himself.

Just a few minutes ago, he could not remember how to lie on the bed. We have a 'bed-sitting and lying down' routine but he needs to be reminded of it every time.

In reference to sleep, Dale still has frequent sleep walking type episodes. 100 Seroquel has usually helped, I think, but last night, his 'dream' kept him active again. I know that without the catheter, he would have been everywhere in the house... just as he was in Feb. 2009.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 22, 2011 11:56 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Coy needs both the Klonopin and the Seroquel. Klonopin addresses the dream-enactment issues. When additional issues arose after Lewy shared our bed, the Seroquel was added. I don't think that Seroquel by itself addresses RBD. (But that is based on experience and reading. I'm sure not qualified to give an expert opinion! 8) )

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jan 22, 2011 12:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Quote:
Once lodged there, do the Lewy bodies stay in that place?

Good question, Leone. I think I asked once why there is so much fluctuation in both mobility and cognition in LBD and someone's neurologist had postulated that when one neural pathway becomes blocked another one is formed until, eventually, the brain runs out of new pathways in that area. Sounds plausible.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 22, 2011 12:32 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Isn't Klonopin for seizures and panic disorder? So far, Dale has never had seizures and he is a very calm personality.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 22, 2011 2:02 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Coy has never had a seizure and calm is his middle name, along with mellow, and low-key. But he has taken Klonopin for about 30 years.

Klonopin was not developed for RBD. In was in use for other problems long before RBD was identified scientifically. Prescribing it for RBD was an "off label" use. The first several years we were continuously needing appeal letters for the insurance companies to cover it. (Treating sleep disorders was regarded by some as a form of voodoo.) I don't know whether the FDA has formally recognized the effectiveness of this drug for RBD, or whether it is still used "off label," but it is definitely the treatment of choice for people with RBD. I believe that the dosage for RBD is quite different than for other uses.

Coy experienced no side effects. If he takes it, it works. If he skips a night, he acts out his dreams that night. If he takes it the next night, it works again. You'd better believe that I am diligent in seeing that he takes it every night! 8)

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jan 22, 2011 2:10 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Once again, everybody is different.
John was prescribed Klonipin by one of the dozen doctors in our medical safari early on (years before LBD diagnosis).
It was supposed to address restless leg syndrome, which we thought he might have. That doc said it was in the family of drugs used for Parkinsons, but John's dosage amt was very small--not Parkinson's level dosage.
However, he could not tolerate it cognitively. It made him very groggy in the morning, less sharp intellectually. When you are walking into court, that cannot happen. He also soon needed to increase his dosage to get relief from sleep issues, so Klonipin became a non-option for John.
We also now know that Parkinson's meds (he tried Sinemet) are probably going to be bad news in general for John in terms of the cognitive price he has to pay for them.

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Jan 22, 2011 11:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Interestingly, Sinemet [or other levodopa/carbidopa compounds] sharpened Derek's cognition, at least, initially. Of course, they do tend to exacerbate the delusions and hallucinations.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jan 23, 2011 12:14 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Which raises the question, I think, whether John is simply one of the minority of folks for whom these drugs are not effective, or whether he doesn't actually have the conditions for which they are prescibed. Who knows?

I have diabetes, type 2. There is absolutely no doubt of that diagnosis. If you look up (or maybe you know) meds for diabetes you will find a long list of them. If the all worked the same for everyone who had the disease, the list could sure be much, much shorter. So far I've tried 5 or 6 different meds. They all work for some people, but finding what works for me is hard.

Yup. Every body is different.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 23, 2011 1:27 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Sleep Disorders as Possible First Symptoms of LBD
I guess our best option is to go with what works for our LO and pray for new meds that will address symptoms even better, or, of course, prevent the disease and restore normal function.

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Jan 23, 2011 10:22 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: Sleep Disorders as Possible First Symptoms of LBD
All the way to the end, I could not get a clinical diagnosis and it was so frustrating. The doctors continued to tell me they were treating the symptoms. One very stern but knowledgeable long time nurse who came for Home Health told me she thought it was Ad. The aid and another nurse who had spent time in a nursing home believed it to be LBD. I even asked Robin and she said she thought from what I said that he had multiple pathologies [oh boy, was she ever right!} Family Dr. said when the report came back, "No wonder we could not give a diagnosis". But They Treated the Symptoms for which I was so thankful. I wrote on this forum admitting that I felt like an impostor but I felt so welcome that I continued to post, ever searching. Stay here everyone, no other place will you find the support that is here.

DrP


Sun Jan 23, 2011 11:17 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sleep Disorders as Possible First Symptoms of LBD
Someone above raised the topic of fluctuations. Researchers are not exactly sure how cognitive fluctuations occur in LBD but they believe it's likely a neurotransmitter issue. That is, the amount of acetylcholine in the brain fluctuates over time.

Perhaps the same is true for physical fluctuations (those being caused by fluctuations in dopamine) but that's absolutely speculation on my part as I've never asked anyone about that.


Mon Jan 24, 2011 12:25 am
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