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Topic sleep and naps Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2010.05.18 12:53
My husband has terrible sleep. I think I've posted about this before. If we had a guest room, it would be no problem, but we don't. If he would let our kids know he has PD, I could sleep regularly on the sofa in the living room or horn in on their space and they would understand, but he won't. I need any advice on sleep you have, here is what we are dealing with.

I know sleep problems in PD are very common. Ours go like this: if we take a nap before going to bed in the early evening, like right after dinner, he'll be up at 1 or 2 am. If he stays up later, like until around 11 like we did last night (after taking a nap after dinner), he was up at 4:30. Sometimes I can sleep through his getting up, but last night he got up, turned lights on, made a ton of noise, didn't use the headphones on his computer so the sound woke me up as well. I went to sleep on the sofa at 5am. Unfortunately, he left his phone alarm for his early morning meds by the sofa, so it woke me up an hour later but not him. I took it to him, told him the alarm went off, and went to make the kids' breakfasts and lunches and get things ready for their day. He went back to sleep (this happens a lot, when I get up in the morning, he will go back to sleep). Still sleeping now, in fact, and it's almost noon.

We have tried a sleeping pill, but he says he doesn't feel rested when he takes it. OK. If he takes a nap when I and/or the kids are home, I can't do anything that makes any noise so that he can sleep. He can't sleep if a neighbor's dog barks or someone is mowing their lawn or working on their house. I don't know what to do. I tiptoe around, like a noiseless ninja in my own home, so that he can rest, but yet he frequently is not because some dog barked or someone's car alarm went off two blocks away. I know how I feel when I don't get enough sleep (kinda like today, actually) and can only imagine how much worse it would be to be ill AND sleep deprived. So I understand, I just wonder if there's anything we might can be doing to help with the sleep.

We have tried melatonin, did nothing for us, we've turned all the lights off in the bedroom, made it quiet, dark and cool like all the experts tell you to do (then we get too cold and he can't sleep because he is freezing)...we even did a hypnosis CD he was supposed to listen to before going to bed...everything I have tried has not helped and I'm out of ideas. Anyone got any? In my research on this, I learned that sleep deprivation is a form of torture, and boy, can I relate!

By LOHENGR1N On 2010.05.18 16:10
lurking, If you do happen to find "the answer" to our sleep problems you'll have a stampede to your door! I'll be leading it!! Don't know the answer for you, just can relate. Many times I can just nod off with noise other times no. I've fallen asleep with 3 Grand kids running around and My Daughter talking to me! I've fallen asleep with window open neighbor mowing his lawn (power mower) and TV blaring. I've gone to bed tired and the clock ticking in the other room kept me awake! I really don't know what to tell you. As far as tapes and keeping things quiet and dark I guess it works for some not for many. You know with Parkinson's our wiring is messed up as the impulses are impeded by lack of dopamine (neural transmitter). So many of the therapies the sleep experts suggest probably aren't going to work with our damaged circuit boards.

Don't think this post did anything except let me gripe with you a bit. They say misery loves company? We should be the one of most loving forum's online then. Next time it clouds up and gets dark when you hear that distant rumble it just might not be thunder, it could be Me or another Parkinsonian maybe their caregiver/partner grumbling about not being able to sleep! Hope you get a better sleep tonight and are feeling better tomorrow. Take care, best of luck and hang in there.

By packerman On 2010.05.18 16:51
would headphones (for either or both of you) work?
or earplugs if that's too intrusive?
wish i had more to suggest...

By lurkingforacure On 2010.05.18 17:52
What about white noise, Al? Have you ever tried a constant noise in the background while you slept, and if so, how did that work for you? I wonder if there was a noise, constant in level and decibel, that might help him sleep better. Anyone use white noise for sleep?

By karolinakitty On 2010.05.18 19:42
When you tried the melatonin, did you try it in stages increasing the dosage 3mg per day until you hit 15mg (that is the safe level)? that worked for us ......

I keep the TV on but have the picture turned off.... i have a stereo system hooked up to the tv in the bedroom, so i have it fixed to shut off the actual tv, but keep the noise on, usually we will put it on a radio station.
Did you also try a fan running ....... it runs at the same decibel level and you can make it different speeds to help drown out outside noises. I don't mean a ceiling fan, a stand up circulating fan. That way you can turn it, to even face the wall if you have to.

The sleep patterns are funny with PD. The doc said to turn off the tv because of the flashing light, it disrupts the "darkness" that melatonin needs to kick in/ I know myself, especially if i have a headache before retiring that the flashing light of the tv, in a dark room, keeps me up. I'm fortunate that i don't have small ones around to worry about, so when we do have a rough night i get to take a nap sometime the next day if i need it, or sleep in. Our meds are on a nightime schedule so no meds needed first in the morning. He gets up and does his thing and i can sleep in.
Also, does he have a need to be driven? ........ Does he feel like he has a million things to do and needs to get moving.... unfinished business...... that sort of thing? That might keep him from getting sleep .... the mind moving a million miles a minute....... the brain not shutting down .........

Just a few things to chew on ..... let us know what's up ......

By LOHENGR1N On 2010.05.18 19:52
I've never tried white noise Lurking, When I'm about to go buggy trying to fall asleep at times I slowly count backward from 10 each step trying to feel my body relaxing and adding something to the countdown like; 10, I feel my body relaxing, 9, as I feel my body relaxing I feel the tension flowing out my arms and legs. 8, my body is relaxing tension flows through my arms and legs out my fingers and toes. 7, my body is relaxed, tension is flowing out, my breathing is slowing to sleep state getting slower and shallower. 6, My body is relaxed, tension is flowing from me, my breathing is slowed and my heart rate is approaching a relaxed sleep mode...... This will work for me most of the time but it doesn't seem to give me a longer duration. Just gets me asleep faster. Sorry I can't be more help. Take care, best of luck and hang in there.

By susger8 On 2010.05.19 07:12
Maybe you could just tell the kids that he thrashes or snores, and that's why you sleep on the couch sometimes?

I would be so tempted to just tell the kids he has PD and accept the fallout. I don't know how you manage to be so restrained -- you have my respect!

Sue

By lurkingforacure On 2010.05.19 07:57
Good, we'll try those suggestions we haven't already tried. We had another lousy night last night and I now have a sore throat and feel sick and know it's because I am getting really run down from lack of sleep. My mood could definitely use improvement as well. No possibility of a nap today because after I get kids to their preschool and school I have to take my mom to the doctor who is facing surgery, I can't even believe this much can go in in a life! I don't think I could nap even if I did get to lie down somewhere quiet, my head is too busy with stuff that needs to get done and you know how that is.

I didn't know about the melatonin 15mg being the safe dose. We went up to 3mg and stopped after no benefit, our neuro told us none of his patients had found it helpful...but I think every one is so very different you can't judge based on someone else. Glad that works for some folk.

Thanks for the suggestions, I also realized that I could sleep in our car if worse came to worse, although it'll be too hot to do that soon where we live. I can see it now, me getting out of the car with my blanket and pillow as the trash men stop in front of our house to pick up our trash....what a sight that would be!

By caregivermary On 2010.05.19 09:58
lurking

I will add that I put off the needed change in sleeping arrangements too long. I finally made the decision 3 yrs ago which helped both my mental and physical health.

I realized recently that I still think that my husb can be in charge and make decisions that will benefit BOTH OF US. However, after discussing this with a friend I now know and have accepted that it must be me. This may be difficult for you to accept but believe me I think the sooner you do the better you will be. I know it is easier said than done.

Take care and take little steps to keeping "YOU" mentally and physically healthy.

By LOHENGR1N On 2010.05.19 16:23
I really can empathize with Lurking and Her Husband. The dynamics they are facing are confusing and frightening. Any future plans they had or have for Their family are in a constant state of flux. Seemingly changing on the breeze, on a good day this might not be as bad as imagined in a rotten spell O.M.G. how can I go on feeling this way.

When I was diagnosed I had no choice but to tell my Children what was wrong...........Their Mother and I divorced several months earlier. My tremors were clearly visible and not even under a modicum of control. My eldest Daughter was 11, My Son 9, and youngest Daughter 4. They really didn't understand just what it was Dad had but it wasn't "Catchy" and the Doctors were trying to make it so it wasn't so bad. Simple and as non threatening as I could make it. It was hard enough on them they didn't need any prognosis. In fact I don't even remember any questions about the future or quality of life. Just onetime asking if I'd die from it and seemingly satisfaction with my answer of not for a long, long time. Ah the bliss of childhood, Dad was sick, the Doctors were helping him and He was going to be around for a long, long time.

Ok enough about me personally, I do share that fact of having had young children at the time of onset. I did and do share their doubts and frustration of facing down "Our peak earning years" with Parkinson's Disease like some demented Jack-O-Lantern grinning back saying "Don't count on it Buddy!" The worry about employment, seeing school plays, graduations, buying or keeping a home, the whole enchilada. The good days at work and the bad days struggling to get through it wondering how long can I keep this up? Frustration in ample servings all around.

Please don't get me wrong with this post! I'm not trying to down play anyone's situation or position battling this insidious disease. It's hell no matter what age or what stage of life you are in and I would never do that! I'm just giving a view of what I encountered and it is a bit similar to Lurking's husband. I'm just trying to explain the dynamics are a bit different.

I believe Her Husband is still working so, He makes decisions at his work. He is still functioning at work and cognizant. Luckily, They aren't facing the point many have had to face where She has to take total control. Again I'm not saying any situation is better or worse just pointing out We all have different dynamics involved. On that note I can't even say if my situation were different would I have tried to hold off telling my children? I hope I've done a little Justus in explaining some of what might be going on. If not I'll have to get my med's "tweeked". Take care, best of luck and hang in there!

By lurkingforacure On 2010.05.20 08:17
I am beginning to wonder if there is more to this now. Last night I slept on the sofa, didn't even try to sleep in our bedroom. At 5am, I was awakended by his cooking SOUP in the kitchen (open to the living room so there was no way I could sleep through this).

I asked him why in the world he was cooking soup at 5am, when he does not eat anything until 11am (if then), and he said it was for me because I was getting sick (true, but eating soup I don't want at 5am is not going to make me better!) While I appreciate the gesture....is it possible he is trying to punish me for sleeping on the sofa (instead of in our bedroom where I get no sleep...)? My husband is the most wonderful man on the planet but I am lost. Is he worried I will sleep on the sofa again (nightly sleep is a real temptation...) and he is lonely? Has anyone had anything like this, and what did you do?

PS-Thanks Al, I appreciate your insight. And I'm sorry you got divorced and PD around the same time, that must have been really, really hard. I so admire your positive attitude in light of what you have to deal with all the time. Thanks for sharing and participating so honestly.

By Emma On 2010.05.20 09:25
l'm not sure what is going on with your husband, but it's odd. He may be trying to punish you, or he may feel bad for driving you out to the sofa and think that he's helping by taking care of you. Another thing that crossed my mind when I read about the soup, and I hate to mention the D word, but could he possibly be starting to have some dementia? When my husband's dementia started it wasn't real obvious at first, no real memory problems but he had trouble learning new things and he just did strange things, one of them being lack of awareness about appropriate times for things, including getting up in the night to make food. To him the things he was doing seemed perfectly logical. My mother, grandmother and aunt who all had, or have, alzheimers also did this. I know from other things that you've written that your husband seems to be functioning well cognitively but I just thought I'd throw it out there.

You have such a difficult situation in so many ways. I really feel for you.

By lurkingforacure On 2010.05.20 12:08
Emma, I know about the dementia stats but really doubt we are dealing with this, at least right now...my husband just had a cognitive exam at the new neuro and did better than me (I took it silently, it was pretty hard, actually!) and he still works full time, software development which there is no way he could do if he were dealing with early dementia...

Plus since he can't really eat at all during the day because of the interference with his meds, he has always eaten at night, often at 1 or 2am because he is up then and doesn't have to take another pill for several hours (his pills are two hours apart from 6am to 6pm-try squeezing in a meal with that schedule, damn near impossible), so it's normal for him to be in the kitchen at odd hours, I was just shocked he was cooking for me. Perhaps in my sleep-deprived state that I am in now I misinterpreted his gesture and he really was cooking for me to try to help me get better? I know he is lonely all by himself and misery does love company...plus with our kids the only time we really get to be together alone is when they have finally gone to sleep for the night, so it's "our" time and perhaps he is upset about that. PD sure presents us with a host of problems, that's for damn sure.

By Emma On 2010.05.20 13:00
I figured that probably wasn't it but this disease is so weird you just never know so I thought I'd throw it out. I suspect that he really was just trying to be nice, to help you. Hang in there, you really do have a tough situation in so many ways. Em

By karolinakitty On 2010.05.20 21:05
lurking ... just want to put something out there ..... about dementia ..... ther can be intelligence with dementia .....
I just fought a hard battle with SC determination and SSA for disability purposes about this very issue.
My PDr is/was a member of MENSA ... you know the genius club... i say that not to boast but to tell you that even with his great intelligence he has dementia.... Mine has done similar things as yours.... great intelligence and especially since he is a programmer seems to go hand in hand with dementia.... don't know if you remember the posts between myself, annwood, Al and several others in regards to this issue. i know you are in a tough situation with your children and all, the in-laws and family stuff in general. The neuro may have given him a cognitive test but what there any memory involved? Not all cognitive tests are memory related. That is short term memory. He may know his job, becuase that is what he does and has done..... Mine did get so bad that, him being a four-star chef couldn't amke a batch os cookies from a recipe. Anyway, i just wanted to point that out again......

By parkinit On 2010.05.20 22:18
lurking -

Strange things are "normal" in our household. My husband is up at all ours. I guess my "blessing" is that my husband is hard of hearing, so when I get up I don't have to walk around being careful. He gets up and "snacks" at all hours of the night, leaving me a mess many times in the morning. He gets up and sometimes writes e-mails to people that don't make sense. Many of the drawers in our bedroom furniture were opened when I ventured upstairs today. He had been resting - taking a nap earlier in the bedroom. He said he didn't do it. I found the guest bedroom bed covers throw over the bed like someone was searching under the bed. He said he didn't do it. It's a strange thing our PD caregiver life.

I think it is time the kids know. This is stressful enough for you without that added burden.

By lurkingforacure On 2010.05.20 22:40
On the cognitive exam...yes there was a memory component and he did better on it, even medicated which fogs his brain, than I did! The fact that he was medicated made my performance seem all the worse. So I really don't think we're dealing with that, yes, I know I want to believe that, but I just don't think we're there. I'm a bit hyper-watchful for a lot of stuff, so I can be prepared.

I was re-reading an article today our neuro gave us in 2007 and it was all about how PD is not just dopamine, there are many systems involved long before motor symptoms show up (like REM sleep disorder, constipation, and loss of sense of smell, these things happen years, often decades before one experiences motor issues)...this makes such sense to me because if it was only dopamine at issue, then taking sinemet would fix everything and stop progression, but it doesn't. Rather, other nondopaminergic systems are involved and continue to decline because dopamine does not affect them in the least. Too bad they don't know what those systems are or have any meds for that, I think that's where a lot of the research is focusing on. I understand a bit better now why symptoms are all over the place, it's not just tremors and ridigity but mood, digestion, sleep disruption, everything. It must be so damn scary to have PD.

I think we will tell the kids this summer so they can have a lot of time to process. I just don't see how we can delay any longer, our oldest knows things are amiss although she wants to cling to the daddy she knows and loves and I can't bear the pressure much longer. Our youngest can't keep his mouth shut so telling him is going to be the same as telling his entire elementary school. Should be fun.

By karolinakitty On 2010.05.20 23:52
Yes .. all the early signs we don't know about or think about at the time.... we put all those symptoms, the REM sleep, constipation, loss of smell, even some of the cognitive issues he had years ago, as relating to his brain injury. For almost 3 years prior to Dx we blamed everything on his regression from the injury. According to what they call Post Concussive Disorder, those were the symptoms...with a few extra things that were/are still going on. I believe that's why they say most folks have PD longer than being diagnosed. We can go back about 7 years to when he thinks things started going on... Even the stiffness and rigidity, we blamed on the beginning of arthritis. I was giving him G/C in pills and liquid but it wasn't helpful. If you can handle things right, i think your kids will be okay.. i'll pray extra hard for them ... i know it will be tougher on them if later they find out dad had something and they didn't know about it.... Best to you .......

By LOHENGR1N On 2010.05.21 00:06
Lurking, You know I couldn't let this post pass! Here's hoping for a as smooth as can be discussion with the children! I know it's hard to do and there are so many things running through both your minds. I also know that You and Your Husband will be running scenarios of questions and what you'll answer for some things that won't even be asked, that's just the nature of we humans. We worry of things that won't happen. I think you are both being very wise to wait until summer and school's out. It will give them some adjustment time.

Just think you may even gain a little more help around the house too, willing help. My hope is for You and Your family to gain and grow as the summer passes. You may even help solve the sleep problem. If Dad needs a nap I'm sure your Daughter would love to "put Daddy down for a nap" bring in a couple of Her favorite books and read or even just look at the pictures with him. For Us adults there's not much more boring and sleep inducing than reading or hearing a child's story book twenty or thirty times while they never seem to tire of it. I do wish you and yours a good coming together and understanding that not only do you live with Parkinson's it also has to live with you.

I find it inspiring to spend time with children and now grandchildren, while they look to us for everything, food, safety, shelter. We gain from them adaptability and acceptance that some things we can't change but we can happily go about something else. At times we adults get caught up with life and forget these things. I do sincerely wish You and Yours the absolute best this summer! Take care, best of luck and hang in there! We're all pulling for you all.


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