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 Excessive sleeping 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Excessive sleeping
I just wondered if anyone knows what causes excessive sleeping. Frank usually sleeps 12-15 hours nightly, I'm not complaining about that, and dozes off and on most of the day. Meds haven't changed for many months. There are days where he will walk around the yard for an hour or so, or we'll go for a short walk, that's the only exercise he gets. Is there a part of the brain that has been effected that causes this as it does with motor skills, congnition etc?
Just courious :|
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jul 31, 2011 8:00 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: Excessive sleeping
According to the Whitworths book ""A Caregivers Guide to Lewy Body Dementia", excessive Daytime Sleeping (EDS) is a "symptom of the slowing down of the brain" and "it is usually present with LBD, especially in advanced stages". "Although a person with EDS can sometimes manage to stay awake and alert during periods of special interest, EDS is involuntary and will increase with the progress of LBD."
My mom sleeps a lot also, although when she has company she can usually stay awake for the visit as long as the company doesn't stay too long!
The book I quoted was written by Helen Buell Whitworth and James Whitworth, and has truly been a god send for me. I bought it when my mom was diagnosed in Feb 2011. I read it through (twice!) and now have it sitting on my bedside table and refer back to it with all of my questions/problems. I recommend it to anyone who is caring for a loved one with Lewy's.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sun Jul 31, 2011 10:51 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Excessive sleeping
Ellen, Thank you, I also have that book and will reopen it and check that section out. It is very informative, we have progress beyond a lot of it so I didn't read it thoroughly.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jul 31, 2011 11:57 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Excessive sleeping
My take:
Excessive sleeping is a normalcy bias concept--excessive for normal people, but our LOs aren't normal and will never get normal. So, let'm sleep. What's the harm?


Sun Jul 31, 2011 12:13 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Excessive sleeping
Dad goes through phases of sleeping a lot too. I find it more so after he has had a downturn, or some infection or other. I always blamed it on the antibiotics, or that it was his system resting having been drained of energy. It used to scare me, but now I come to expect it. I agree with Gail - where is the harm in letting them sleep. In my Dad's case, he is out of torment during this time.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Jul 31, 2011 12:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3178
Location: WA
Post Re: Excessive sleeping
Derek sleeps most of the time and is only awake for short intervals before nodding off again.

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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.


Sun Jul 31, 2011 2:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Excessive sleeping
Fatigue is a very common symptom in most neurodegenerative disorders, including LBD. Sometimes if there is tremor or myloclonus, this is fatiguing for the body as well. Also, there can be sleep apnea or RBD, which means that the quality of sleep itself is not very good, so the person is fatigued during the day.

Sleep is the only way the body can restore its physical and mental energy. We also make dopamine when asleep and that's a neurotransmitter in short supply in PD and atypical parkinsonism disorders.

As we've mentioned here before, when the sleeping gets to 22+ hours a day, that's generally a sign that the end is near.


Sun Jul 31, 2011 4:58 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Excessive sleeping
Thank you to all, believe me, I have no problem with Frank sleeping as long as he'd like, at least I know where he is. I was just courious if there was a certain part of the brain that had been effected. It really doesn't matter, it is what it is.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jul 31, 2011 5:06 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Excessive sleeping
Gerry,

My Dad has PPD which I guess is Lewy too - but different than my case...my Dad sleeps 12-14 hours a day or more - I used to be worried, but then I decided not too - it was better for him...In my case, I have severe fatigue which may be the same as excessive daytime sleepiness, but I can rarely ever sleep - I try not to sleep in the day - but even if I do, I usually never really fall asleep....I sleep about 5-7 hrs a night on a good night.....I used to sleep like a baby before I was ill....I hope my sleep will get better with meds or a new phase or whatever it takes since the fatigue is so debilitating...Dad actually is more functional than I am - I think the rest he gets is actually good for him considering all his body/brain has to deal with....

Best wishes,

Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Last edited by Tonya on Mon Aug 01, 2011 4:48 am, edited 1 time in total.



Sun Jul 31, 2011 6:59 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Excessive sleeping
I just pulled 'part time superman' ....'showtime'...of 41 hours...that ended
At 11pm Saturday nite...I then slept fitfully and many dreams and two
Major RBD episodes according to others in the house...slept until 11pm
On Sunday nite... Just a little while ago...

I stll can pull off times like this... Not very often...

I fought off sleep at different times in that 41 hours...

That 41 hours belonged to me...
The last 24 hours I surrendered...
Now I am wide awake...

No more normal

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Aug 01, 2011 1:33 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Excessive sleeping
Gerry -

Lots of parts of the brain are involved with sleep. There are some good images and descriptions here:

http://thebrain.mcgill.ca/flash/d/d_11/ ... r_cyc.html

http://healthysleep.med.harvard.edu/hea ... physiology

There are no images but lots of understandable text here:

http://www.ninds.nih.gov/disorders/brai ... _sleep.htm

Robin


Mon Aug 01, 2011 8:37 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3123
Location: Vermont
Post Re: Excessive sleeping
Craig - are you saying you didn't sleep for 41 hours? If so, did you have someone with you to look out for your safety? You weren't attempting to drive during that time, were you? Has your dr. given you anything to help you sleep when you need it? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Aug 01, 2011 9:56 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Excessive sleeping
Robin, Thank you for the links, I just finished watching and reading them and have a "little" better understanding of what's going on. Sleep is a GOOD thing for Frank, he's never going to improve so sleeping lets him escape some of the negatives of LBD and gives me a break.

As always, thank you for all the info.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Aug 02, 2011 7:32 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Excessive sleeping
Lynn…I was with other adults….

I really only attempt to drive responsively….

every now and then….I just like to fight it….just because….it costs dearly…but I know that going in….

so in some ways….I am still normal

my point for me….there is no normal for sleeping for me….for over 4 years...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Tue Aug 02, 2011 9:11 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Excessive sleeping
Craig, there are times when my dad fights sleeping and he says it's because of the horrible dreams or possibly hallucinations. He says he feels like he's fighting the devil. I'm wondering if you have those types of problems with sleep. Is that why you want to stay awake?

Michelle


Tue Aug 02, 2011 9:48 pm
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