Awake

[cybersue]

I have had Parkinson's for the last 10 years. It's another sleepless night. You would think I would be used to this. The lack of sleep really makes it so difficult to plan anything and it is really depressing me.

[Hidden]

Hi Sue, I've had 3 hours a night for 12 years. I cope by doing stuff writing painting cooking I avoid drumming!!! Not fighting it helped me enormously.

C

[Hidden]

Yea , I know what you mean, 5:30 am . I have been awake 2 hours. Nothing much I can do inside that does not create noise and wake my wife. (Sometimes I wake up grumpy, and some times she wakes up by herself) Painting is good but I can still make noise knocking over easel and paints. The corner store two blocks away is open 24 hours a day as is the coffee and doughnut shop 1 block further. However both would be almost empty this time of night except for a few night staff that are too tired to carry on a conversation. Neighbors and the happier day shift staff will be along in another couple hours . I will soon claim my morning paper from the driveway and read it until the sun rises but that is often just time wasted. Frustrating because I thought I had this sleep thing under control already with exercise and now I am back were I was. Strangest is that My PD symptoms are reduced and I feel my best at this time of day after only a few hours sleep, then I can do things I could never do in the evening. My afternoon nap is inconveniently timed for every one else. The rest of the world is out of sync and my internal clock is wrong but that may just have to be the way it is whether they like it or not. A bit lonely, I would not call it depressing.

EDIT Had great sleep the last 4 days, wish I could save it somewhere for when I need it. No rhythm or reason why I could not sleep .

[PatV in reply to Hidden]

Hope you find something fun to do! Time is precious.

[mccshe]

Hi cybersue

I am so tired (no pun intended ) of trying to fight the awake thing, and I understand your disappointment with trying to make any sort of plans. I don't know about you but even if I am able to keep any plans I've made I am always late. Sometimes it takes me hours to get myself together . I function more on a spur of the moment basis for even the best made plans are difficult to keep.

Allow yourself to sleep whenever your body will let you, whether it is in front of the tv , in the passenger seat of the car, while soaking in a hot tub with soothing salts. That's what I do, sometimes when there are people at my home I feel so exhausted from no sleep I have been known to excuse myself to go and lie down. Once when my brother was visiting from Virginia and we were all out for a nice dinner , I could feel that overwhelming tiredness coming over me. I excused myself from the table and went to the car for what was supposed to be one of my famous rejuvenating power naps of 10 or 15 minutes. I slept for the entire time my family was inside the restaurant. lol. Guess I needed it!!

There were times when I was still working I had to pull over to close my eyes for I absolutely could not drive another 50 feet. I can't tell you how many times my husband found me along the road sleeping in my car.

I am sorry for your feeling depressed , it is certainly a known side effect of sleep depravation as well as being on of the most common complaints of PD patients. You want to tell your doctors this , not to be bossy , just helpful .

Best regards

Sheila

[laglag]

Hi all. After at least 5 yrs of not sleeping well, here are some things that helped me:

1) Retired which eliminated a lot of stress.

2) 3 Tbls. Coconut oil (1 @ bedtime)

3) Healthy chocolate dipped in coconut oil (I use Xocai but it's kind of expensive) just make sure there's not a lot of fat or sugar)

4) Strenuous exercise (NOT at bedtime)

5) On occasion I'll take 2 Motrin & I sleep even better but don't want to take it on a consistent basis. For some reason it helps more than any sleeping pills the doctor ever gave me?

I've experimented & these have really helped me, but as you know, we are all different. You may want to talk to your doctor to make sure they are good with these things. I still have some restless nights but not near as many. Good luck.

[PatV]

You've probably tried it all having beat it once. Let us know how it goes.. Just when I think something is working, wham! something else pops up!

[zjillian]

I am so sorry to hear of your sleepless nights. My father lived with me and had Parkinson's. Sleep was a problem. He recently died, but after a long life, 99 years old, he was a tough and active man. Who once told me late in his illness "Surrender is not an option." I want to tell people with Parkinson's about him because he had it for at least 37 years and kept on keeping on.

Not sleeping is demoralizing at best.

Thinking of you,

Jill

[cybersue]

Wow, 99, that,s inspiring. I try to stay upbeat but it has been tough lately. Last night was night terrors. Now those are a ride for a rough night.

[Court]

Sleep. I can't remember when I had a good night's sleep. I fall asleep easily, wake up thinking I have slept well, only to find that I have only been asleep for a couple of hours and there is a night still to get through.

I find reading difficult as my eyes are tired. Time seems to drag, until I go back to bed, falling asleep when everybody else is waking!!!

[JohnPepper]

Hi Cybersue. Don't give up! If you let the lack of sleep to get you down, you make things ten times worse. If I am unable to sleep, which is virtually every night, I get up and look at my emails etc. If there is nothing that needs my attention then I sit down and read a monotonous but interesting book. That makes me fall asleep in the chair or else I feel the sleep coming on and I go back to bed. My late wife was worried about me sleeping in the chair or sitting in a cold room, so she begged me to stay in bed and read. To make this easier for her, I rigged up the light above my head so that it pointed away from her. I was then able to read in bed, while the light level on her was very low and non-invasive. She died nearly four years ago and I have recently married again. My new wife was previously married to a Pd sufferer and he had Pd for the last 22 years of his life. She is used to this problem and insists on me reading in bed as well. I am not in any way stressed by the sleep problem. I try hard not to sleep during the daytime, as this reduces my nighttime sleep. In this way, I am no longer stressed and am able to live a normal happy life.

Good luck

John

[cybersue in reply to JohnPepper]

Thanks John

[John3419]

Hi cybersue

Same problem here....my doc prescribed me Zopiclone 7.5....usually I get off to sleep ok, have up to 2 hours sleep, then bung in the Zopiclone and get further 3/4 hours. Up for a pee, then if I'm lucky I get a further

1/2 hours. Doing this for 2/3 years...yes I'm addicted to Zopiclone ..so what...I'm also addicted to Stalevo, my main source of levodopa....hope it helps

[cybersue in reply to John3419]

Thanks my dr had me on quetiapine 25mg. I fall asleep great. Just can't manage to stay there. I had a good night last night . Can't believe it . It happens around every 2 weeks. I guess the body just stops for a while but now I feel sluggish . Wish there was a happy med. we just have to roll with what our bodies throw at us. Thank goodness for our families.

Thank you for reaching out. To me. Friends and family are great but they just don't understand sometimes do they?