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

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

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

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?

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.

Derek sleeps most of the time and is only awake for short intervals before nodding off again.

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.

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

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

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

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

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

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

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, 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