Parkinson's Sleep Time Adventures
Last updated: April 2023
Lately, my sleep routine has been transforming into something different. As a result, I’ve been making some adjustments to counter obstacles over time, and they’ve allowed for a difference in my life.
Early in the Parkinson’s game and even before, I had been a restless sleeper who snored. When my wife got her ACL repaired, she needed more room to stretch out, so we ended up in separate beds. After she got better, we would do nights together and apart. Eventually, before my experiences with bad REM sleep behavior disorder incidents, we went to different beds.
This has been good in that she sleeps better, but it’s not ideal because we’re in different rooms. It also worked when I went through trying to use a CPAP machine, but that positive became irrelevant since I took the mask off after I fell asleep. Gotta love Parkinson's.
On vacation, we will be together when we spread out in a king-size bed. If it’s available. At home, sometimes, I will start in the same room with her, but go to the other room when I wake up to go to the bathroom. This avoids waking her up when I plop back onto my side.
Growing up, I knew that my grandfather and nana were in different beds when they were married (he died in 1958). Like many people, I always thought that this wasn’t ideal. After all, even when a couple isn’t on the best of terms, there’s the physical connection that is a toe touching a shin. It’s hard to do that on the other side of a wall. That said, I hear of more people who do this for similar reasons (and their own choices, too). In the end, the only normal is what works.
New sleeping companion
Recently, my dog Sparky decided he likes to sleep at the foot of my bed. It's a queen bed, which is all the room really allows for. I sleep on 1 side, as I did when my wife slept on the other side. Yes, my pillow kingdom stretches out, but I’m snug on the left-hand side. Thus, when he chooses to be with me instead of my wife, Sparky will move onto the right-hand side to start. Interestingly enough, Sparky will sleep on my wife when he sleeps there. Go figure.
If I read before bed, something I’ve been doing more to try to avoid late-night screens and too much television, Sparky will navigate the bed. Like a drunken stumbler, he will wake up for a good 5 seconds, move 2 feet and crash hard into sleep again. He repeats this quite often over the night.
Sometimes, he will sleep on his back with his paws in the air. This exposes his furry little belly for rubs, but this also shows the he feels completely safe from harm. It is the ultimate doggy sign of trust for his "hooman." And yes, I'm a proud "fur papa."
REM sleep behavior disorder
Unfortunately, but not often, I still do REM sleep behavior - though I haven’t done this regularly since 2018. Some of that was a side effect of a dopamine agonist I was on. I referred to it as "wild side" since it took me there in a bad way (cue the Motley Crue song).
At the time, I quit the medicine, and since then I’ve been good to go on amantadine, Azilect, and levodopa carbidopa. This isn’t to say that my fingers don’t "type" as I drift off or I don’t move around in my sleep, but it cuts down on sleep talk and fight to survive moments.
Roughly a month ago, I woke up from what seemed to be a vocally aggressive dream. I viciously kicked at something on the side of the bed that Sparky sometimes gravitates to when he sleeps at my feet or against my leg.
I woke up panicked that I had hurt him, but he was on the other side of the bed. He never treated me differently, so I assume either the incident was in a dream or it didn’t affect him. Additionally, he had no injuries or barking reactions, so I assume this situation was only in Dreamland.
More mood issues
It scares me as well that my mood issues have increased.
The bane of my existence seems to be companies like the Cosmodemonic Pharmacy Company, who can’t get insurance coverage squared away. Hence, I go back and forth from person to person, and get more frustrated. Then, I’ll come home and need to vanish into my quiet space (my bedroom), where I’ll lock the door (it’s an old lock that doesn’t open from the outside).
It's not sleep, but it is meditative and zone-out time. Sometimes, I'll lay in the quiet. Other times, I'll sort old baseball cards to relax.
That said, it bothers Sparky that I don’t let him in. He just doesn't get why "play guy" can get so odd sometimes. Also, it doesn’t impress him when he loses out on walks. This is especially true since he has me trained to do them right away.
I’m also trying to be more active playing squeakie toy fetch by his rules (get them out from under the radiator or chairs, where he loses them ASAP). He does like this, just as he likes how much my "stay awake medicine" (modafanil) has adjusted my sleep patterns to stay awake throughout the day and to get up earlier, so there are some wins in this.
But not always.
His request that "this insubordination will not be tolerated" would be abided by, but, you know, Parkinson’s rules everything around Sparky, my wife, and me. My wife has had to learn this cruel lesson, and now my dog does, too. Fortunately, the 3 of us are doing our best to enjoy our lives together and stay close. That said, it's about learning on the fly and adjustment. Unfortunately, I don't know how to explain Parkinson's in "Dog-ese."
Maybe while she goes to visit her sister in Georgia next week, I’ll break out the tent and set it up in the living room to see if I can introduce him to camping. I think that sounds like something he would enjoy, as would I, knowing that my feet are trapped inside of my sleeping bag. While we're both snoring away, he can focus on his doggy dreams of treats, walks, and squeakies, and I can focus on all 3 of us making family memories.
Do you experience issues with spatial awareness?