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Topic Sleeping for days Go to previous topic Go to next topic Go to higher level

By Michele On 2011.11.29 11:59
My sweet husband has advanced Parkinsons. He has started to sleep excssively about two weeks ago - one day last week he slept 38 hours, another 20 hours. Some days he would get up for 2 or 3 hours and then go back to bed. Today he is still sleeping since sunday night - 40 hours and counting. He was up all day Sunday, 12 hours, and has been asleep since. He does not have a fever and his blood pressure is very high. I woke him up to clean him and he responded but just fell back to sleep. His neuro does not have hours today. Has anyone experienced anything this? I know fatigue and sleepiness is common in Parkinsons but this seems excessive. I will call his neuro asap.
p.s. he has been taking Nuvigil during this time. this is the only thing different. Nuvigil is for Narcolepsy and we have been trying it on and off.

By parkinit On 2011.11.30 00:05
I've not experienced this. Please let us know what you find out from your neuro.

By Michele On 2011.11.30 15:14
His neuro said to take him to the ER to get checked out esp for possible infection - even though he had no temp. Tests came out ok except for urine culture which takes a day or so. So, with negative results (which is also probable for the urine culture), it is probably progression of his Parkinsons. Hank is 70, he was diagnosed at 60, wheelchair bound at 65. He has been progressing very fast. I'll be getting another consult with his neuro (local) and then take him to a movement disorder specialist at Univ of Penn for a second opinion. This was a reality check for me. I still bounce from acceptance to denial at times.

By parkinit On 2011.11.30 20:35
Yes, it is difficult to determine if "this is really progression or something else." We always hope for the something else.

Hang in there and continue to keep us posted. Hugs,

By BOCareGiver On 2011.12.05 00:06
I've had this experience as well. For one 24 hour period my spouse was sleeping and uncommunicative, refused her meds, or food, etc. Wouldn't talk to our daughters on the phone. Her doc said that I should expect this to happen from time to time as the disease progresses. She is now back to what passes for normal around here ... 8-)

She was dx'd about 20 years ago, but has gone into a steep decline in the last 5 years or so.

By Michele On 2011.12.05 08:44
BOCareGiver, thank you for your post. It's nice to get some reinforcement. We will be seeing my husband's neuro in two days and I will talk to him about this.
An update on us - after he got home from the ER he seemed to be back to his normal for the next five days or so until yesterday when he slept in until 1:00 pm and was tired/sleepy all day. He took a Nuvigil but he got up so late that it kept him awake until late last night. So, he'll probably sleep late today. Another thing that has been happening is delusions more frequently, sometimes all day. It seems like his dreams spill over into his waking hours. This used to occur in the mornings for short periods but since he is sleeping more now it occurs more frequently and lasts longer.

By Reflection On 2011.12.05 10:24
A piece of the puzzle might be winter - shorter days, less light. If it's possible somehow to get your husband outdoors into bright sunlight (or as bright as it gets this time of year), as early in the morning as is feasible, it might help "reset" his sleep/wake schedule. If he can't get out, even being by a bright window might help a bit. He might still sleep a lot during the days, but at least be more wakeful during the mornings. Good luck.

By susger8 On 2011.12.06 07:46
My dad sleeps a lot -- I think it's partly because he doesn't have much to do. In addition to the PD problems, he has impaired vision due to glaucoma and can't see much.

He did go through a phase of sleeping almost constantly, which was when we tried out clonazapam at night for his nightmares. We had to stop that after a few days because he was much too sedating. We're now using melatonin at bedtime, two 3 mg tablets, which works pretty well.


By abp0822 On 2011.12.23 14:54
My father has sleepy days and not so sleepy days. The neuro told my mother to not let him sleep all day. Get him up as much as she can and keep him moving.

Mom works very hard to do that but some days are just sleepy days. We consider them part of his "off" time. She has him wake at a reasonable hour, 2 cups of coffee, shower, dress (with her help of course.) He does take one or two naps a day. Usually at 10AM and 2PM. She takes him all over town running errands etc to keep him moving and stimulated. He is 10 years post dx an not yet wheelchair bound. He also goes to physical therapy 1 or 2x a week and a "stretch and tone" exercise class 3x a week.

It's really hard. Hang in there.

By LOHENGR1N On 2011.12.24 00:10
Wow, abp0822, That sounds like a lot! I think I'd be sleeping all the time trying to keep up with a schedule like that myself! As our disease progresses we must try to keep active and moving however one consideration that must be kept in mind is to do this activity during the times we are getting the most benefit from our medication. I can still do errands and such but I must have rest times in between. You know like if I'm planning on shopping I can do a large department store say in the morning but if I need to go to get groceries also that has to wait till afternoon or the next day because I have to rest between. This is because I get limited help or relief from my medicines, a window or block of time they work. The Bradykinesia or slowness of movement with Parkinson's is due in part to the stiffness the disease causes in our muscle groups and muscles. To overcome this We have to exert more energy to move. This exertion comes with a price, that price is it tires Us out. Think along the lines of going to the gym for a workout, lifting weights or better yet strapping those wrist and ankle weights on then going about doing your daily routine. The extra effort involved to do things only you can't unstrap or remove them. This is something like what we go through constantly, day after day it is tiring. So by all means help him keep active and stimulated but around periods of rest (it doesn't have to be sleeping constantly it can be watching a show or having a coffee sitting and people watching. Too much on the go could lead to problems of exhaustion, dehydration and sickness. Just some things most people wouldn't think about when the Doctors say well don't let them sleep keep them moving. Take care, best of luck and hang in there.

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