REM Behavioral Sleep Disorder in Parkinson’s

Andy and I have always shared a bed. The size of the mattress never mattered- only that we shared it. After 47 years of marriage, we’ve shared beds in houses, on boats, campers, RVs, tents and mattresses pulled outside to sleep under the stars. We’ve shared our family bed with our kids too but we always slept together in every circumstance. It seemed to be a nice part of being married.

This symptom took us by surprise.

Although the remedy is easy, it’s another loss.

Andy and I have always shared a bed. The size of the mattress never mattered- only that we shared it. After 47 years of marriage, we’ve shared beds in houses, on boats, campers, RVs, tents and mattresses pulled outside to sleep under the stars. We’ve shared our family bed with our kids too but we always slept together in every circumstance. It seemed to be a nice part of being married.

Some years after Andy was diagnosed with Parkinson’s, the shaking he experienced at night began to bother me. I’d awaken to vibration and movement that made it hard for me to sleep. We purchased two single mattresses and placed them side by side, with an inch of space between.

Problem solved.

Some years after that, we were sleeping peacefully on our side by side mattresses when I was shocked into being awakened after being painfully kicked- hard- on my legs by Andy.

“Andy!!”, “Wake up!-STOP- you are hurting me.”

He quickly came to his senses and told me he was playing soccer in his dreams. We laughed but I was still rubbing what turned into a nasty bruise.  Next time, Andy threw himself out of bed trying to make a tackle in the football game of his dream. He was okay but it was unsettling.

Once these episodes began happening, there was no telling when they’d happen again. It happened regularly though. I’d wake up with adrenaline coursing through me after being punched, kicked or tackled. Andy always fell right back to sleep and I’d lay awake recovering from the trauma by myself. It wasn’t that he didn’t care but he had no memory of it at all.

His neurologist told us, It’s called REM sleep disorder and it happens to 50% of People with Parkinson’s.

Andy was fortunate to have had successful DBS (deep brain stimulation) surgery a few years earlier and his shaking had completely stopped. We bought ourselves a new king sixed mattress but then this new symptom emerged. At first I tried to live with it- but the violence was too hard for me. I’d awaken when his breathing changed and feel fearful.

We bought two single beds again and placed them a couple feet apart. I slept safely again and every night, in case Andy has an episode we put pillows around his bed to soften his falls.

Problem solved.

What remains, though, is that basic human pleasure of sleeping together is gone. In comparison to other symptoms that Andy has endured, it is a small thing. It is certainly a small thing. Many couples choose to sleep apart, in different rooms even. The trouble is, we are not those couples. For us, it is one more loss. It is one more choice taken from us since living with Parkinson’s.

Loss is a part of living. Turning those losses into something acceptable enough to move forward in life anyway is part of healing the loss. The real magic of turning something hard into something good can only be learned when faced with something hard.

We are still happily married and we no longer sleep in the same bed. 

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One thought on “REM Behavioral Sleep Disorder in Parkinson’s

  1. Good story, Michelle. Even in a non-Parkinson’s relationship, there are ways to solve problems and still stay close. Bravo for your creativity and practicality. Oh, and love.

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