When sleep and Parkinson’s disease don’t behave as allies

Even if sleep isn't an issue, getting into bed can be

Christine Scheer avatar

by Christine Scheer |

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Lying down and sleeping seems like such a natural thing to do. I remember when one of my mother’s caregivers said to me, “I finally got your mother to lie down.” What? My mother didn’t know how to lie down? It’s true: Dementia had robbed her of that seemingly straightforward part of her bedtime routine.

After I was diagnosed with Parkinson’s disease in 2015, I wasn’t the best sleeper. I would usually wake up in the middle of the night with tremors and worry for a few hours, then finally fall back to sleep about 20 minutes before my alarm went off.

Sleep hasn’t been an issue since my deep brain stimulation surgery in 2021, but getting into bed is another story. John, my husband, calls it my reverse triple cannonball. He exaggerates on occasion.

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The problems started when we got a new mattress two years ago. It’s super comfy to sleep on, but it is 1 or 2 inches higher than the old one. It’s difficult for me to climb onto it, so I kind of do a backward leap, then roll to the left, roll to the right, and eventually get comfortable. Meanwhile, if John has gone to bed first, all this commotion wakes him up.

The other option is to climb onto the mattress on my hands and knees, but then I usually freeze with indecision about how to lie down from that position. Then I have to wake John up for help, anyway. Triple cannonball it is.

Luckily, I sleep very soundly these days, only waking up if nature calls or I have a terrible dream. These nightmares have only happened to me a couple of times, but the most recent one was the most alarming. Some people with Parkinson’s have frequent nightmares. There doesn’t seem to be a specific reason; it’s just another unasked-for gift from Mr. Parkinson’s.

Don’t you hate it when people insist on telling you their dreams? I won’t tell you the dream, but I will tell you that it happened on our holiday in Portugal, and John had to wake me up because I screamed so loudly I woke up all the dogs in the neighborhood. Who knows about the other hotel guests? If I didn’t wake them, the barking dogs probably did. I think they were probably relieved to see us both at breakfast in the morning, just to ease their minds that nobody was murdered during the night.

When it’s snowing indoors

I follow all the advice about getting a better night’s sleep. Keeping the room cool is one crucial factor. We usually open our windows, even in the middle of winter, and snowflakes often blow in. Honestly, I don’t even mind that. Even though it might be cold getting into bed, my body temperature has skyrocketed within 20 seconds, and I’m usually kicking the covers off.

Once awake, turning over in bed is very awkward. You can get special silky sheets that make turning over easier, but I have yet to go there. I’m worried I’ll slip and slide right onto the floor. In the meantime, I use my regular cotton sheets to help me move. If they are tucked in correctly, I can get enough leverage to flip myself over. It’s not graceful, but it works.

How did a simple good night’s sleep become so complicated and my body so unwieldy? These are good questions — best answered in the morning.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


Marianne Haugen avatar

Marianne Haugen

I find myself right where you are. If I get 4 hrs in total one night i am ok...not really
Im considering an Electric bed, expensive yes, but I have only one life. No partner to help me i will have to get a Rod and silk sheets too. What we do for MR. Parkinson . Melatonin
Is supposed to help.. Anyone with experience?
Good night from Norway.

Christine Scheer avatar

Christine Scheer

Hi! I've heard that melatonin does help, but if you take too much it can lead to daytime sleepiness? I have no experience with it.
Good luck!

amy tomlin avatar

amy tomlin

Like your article. Yes I am really hoping you are right about exercise. I am walking, going to Rock Steady Boxing and walk 9 holes at the golf course at least 2-3 times a week. It is really difficult at times from the stiffness and some weakness. But as you say we have to KEEP MOVING !!!! I have had Parkinson dx. since 2020.

Christine Scheer avatar

Christine Scheer

Hi, I hope I am right about exercise too! If I take a day off from exercising, I am so stiff!

Cheryl Grafton avatar

Cheryl Grafton

My sleep scenario is almost exactly like yours including the cannonball into bed. I am newly diagnosed with PD so still have problems falling back asleep when I awaken in the middle of the night. I had to smile reading your article and knowing that I am not alone on the journey with this disease. Thanks for sharing!

Christine Scheer avatar

Christine Scheer

You are definitely not alone! Thanks for reading!

Krishnan Gangadharan avatar

Krishnan Gangadharan

Hi Christine,
Your story of climbing onto your bed is a nightmare and your experience is ditto to mine. I have also tried the four-leg trick several times but occasionally end up freezing and then my wife has to come and 'unfreeze' me and help me to lie down. Once my head hit the bed I plunge into a deep sleep, except for getting up to answer nature's call, once or twice.

Thanks for sharing your experience. It helps to unwind and reduce tension.


P.S. : I am a 78-year-old Indian journalist(retired) with Parkinson's as my companion for more than 23 years.

Christine Scheer avatar

Christine Scheer

Hi! Thanks for your nice comments, I appreciate them.


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