Wild in Bed - A Parkinson's Story

            Wild in bed. The words conjure up images of being sweaty, nasty out of control in some Nichols Sparks-style romance culminating with an X-rating, at least when the screen goes dark, but for many Parkinson’s people, wild in bed is a mix of things (listed by our friends at Parkinson's Disease Research Center) that range from bizarre dreams that result in acting out violently or suddenly while asleep to restlessness and occasionally “abusive” behavior. 

             A sweaty affair for people with Parkinson's tends to mean hyperhidrosis and the need for extra water or Gatorade by the bed (since we can wake up in a lake-sized puddle under our head, and that doesn't even get into the physical efforts of an actual sexual interlude, should that happen), but yes… the thought of “good lovin’” or being W.A.S.P.'s proverbial animal is nice, but wild in bed as it is experienced by many a person with Parkinson's is definitely not those sex-a images of 20-something Maxim and Cosmopolitan aerobecized bodies for said target audiences either. In fact, it's more like a mix of other sexual problems (listed by our friends at Michael J Fox) than how our movies lied to us during our formative years. 

            As for these scratches and marks from being in the same bed in a wild state of undress, they aren’t a 50 Shades of Grey thing like that either. No, they’re the result of "wild and uncontrollable" actions that tend to happen in the “role play” that only happens when the Parkie acts out his / her slumbering dreams (as opposed to a novel that uses annoying fictional characters to fulfill unrecognizable fantasies). 

            Thus, this column has nothing to do with the sexual appetite of people like Kobe Bryant or Ben Roethlisberger, let alone the POTUS’s sexual advice to wannabe misogynists and Jersey Shore cast members, so my audience doesn’t need to worry about this blog post including long missives on the term “slut shaming” or featuring romanticized eroticism to drive a 15-year old boy into id-driven hyper-sexuality as created by Game of Thrones. That said, what this column does do is explain the sexual effects of Parkinson’s that can happen or won't happen, but it’s mostly about sleep or lack of quality sleep. Thus, you should take heed, audience; this column is rated PG, so don’t feel like you’re going to be titillated by its tales.

            Unless you wanted to be titillated, which wouldn’t be right since I’m married, and besides, even if I wasn't, I have no ability to write “love scenes” or contemplate what constitutes some sort of dreamworld sex fantasy. C'mon. I'm past middle age.

            So let’s start out with the scratches I mentioned above. I’ve found them on my own body, and prior to knowing what they were, I know my wife found them on her arms or legs, too (as well as small bruises). I love her more than anything, so I would never lay a finger on her, but Parkinson's sleeping bodies don't think about that when it comes to what's going on. To illustrate, here's my leg from a recent sleeping "adventure." The PD nighttime battle makes no distinction between foe and friend, let alone self and other. This one is pretty mild, but it stuck around for over a week.

            Now, we sleep in different beds. It took some time to get used to, and when it comes to "normalized romantic living," it’s not the best scenario, but it’s much better for both of us, so it is the real life / new normal best scenario. Yes, a better scenario is being able to touch her leg with my toes, even if our bodies are turned to face the other way on opposite sides of a huge bed. That way, at least, we’re connected to one another in sleep. However, between the snoring (sleep apnea is a problem for Parkies, too, and I'm loud enough to be heard a ways away) and the issues above, it’s better to be in different rooms so that we can get sleep. Even on vacation now, we tend to go with a pair of doubles instead of a queen... unless we can get a king, which we rarely do.

            For those who love Parkies, but who aren’t cohabiting with them to know what happens in their lives, it’s also important to note that some meds can pretty much make sleep impossible. For instance, when I lived in the world of Amantadine, I would fall asleep at 2:00AM, and I could wake up before 7:00AM feeling ready to go, no nap needed. Prior to that, it took a Congressional order and King Kong to drive me out of bed before 9:00AM with a half hour to get energized. Looking at it like that, if one partner goes to bed at say 10:00PM, and 4 hours later the other one crawls into bed, that disturbs sleep. We’re not even getting into twisting and turning around. Thus, separate rooms, while not Brady Bunch romantic, definitely represent a courtesy to said other person. In fact, according to one 2013 study from Ryerson University in Toronto, they say 30-40% of couples do it for good reasons, despite losing out on some benefits (not just sex, but warmth and intimacy, which help make oxytocin).

My grandparents slept in different twin beds in the same room. I never understood that as a kid because I thought a big queen or king was what you did, but as an adult, I have reluctantly come to “own” it for my life. Looking at how much I can mess up a bed with my ability to throw pillows and strip the pillowcases off of ones that I leave on the bed, it’s obvious that my behavior and restlessness is a challenge for a light sleeper like my wife. That’s not even getting into the previously mentioned marks that my slumbering self leaves on both of us and the myriad of pillows that I need to make me comfortable enough to sleep. I’m not sure what grandpa Manny and my nana went through to get to that point, but I’m sure it worked for them. After all, they had 4 kids before he passed away in the late 1950s.

For me, I’m glad the cause of this problem is not demons scratching me. Some of the marks have been deep, but others, not so much. When I see 3 in a row, I’ll consult the exorcists. Until that time, I’ll just blame Parkinson’s. Granted, PD isn’t the ideal thing to blame, but it sure beats an inhuman beast coming straight from Hell to possess my soul.

Parkinson’s dreams tend to be very vivid and very strange. For instance, today I took a nap and dreamed that a government passport agency had found out that I was a heroin addict. I freaked out because I was stuck where I was and unable to get home, which looked like a brightly lit city street by a Sunoco at some giant gas station convenience store (around here in Amish Paradise, Pennsylvania, we have Sheetz and Wawa) waiting on the phone with some woman who was trying to help me rectify my situation while I waited for my physician assistant friend Will to get me off the hook, since I most definitely wasn’t a heroin addict.

Other dreams I have feature themes like going back to England in search of some coastal lighthouse area, which is sometimes near where I lived in Suffolk and other times it is on the southern coast. I go back fairly regularly (probably a few times a year in dreams), but I never make it to that mysterious place. In fact, in recent dreams, I specifically reflected how I dream about looking for the dream world place. I used to dream of my childhood home from 6-16, but that place is gone from current dreams. In fact, I dream more about the house after it than I do about it, which is strange because I probably spent 20 years dreaming about it, if not more. Additionally, the dreams of being on my teenage paper route were replaced with dreams of needing to clean out my old apartment prior to moving in with my wife in 2008. Sometimes, I dream about whether or not the dream is real, and I touch myself to prove I’m sleeping, but in the dream, I can feel myself, so I’m trapped in a world where I think I'm actually awake. In addition, in most of my dreams, I see people from various times and places of my life intermingling. Sometimes, I recognize them. Sometimes, not so much. Other times, my mind puts the wrong name on people. Go figure. 

Much of the time, it feels like Eternal Sunshine of the Spotless Mind (a Jim Carrey / Kate Winslett movie) in there. Great movie. You should watch it.

This vivid dream world of PD has fed into my interest in dreams for my writing. In my supernatural books, there is a substance / drug called Our Lady of Guadalupe, which allows certain people to see into the future. It is highly hallucinogenic, and it is very dangerous to anyone who touches it. That said, certain people are more likely to find their way to clairvoyant visions and future prophecies with it, so certain groups are looking to harvest these ideas to create a catastrophe of Biblical proportions. On the other hand, the good guys and gals are looking to stop this. If you want to learn more, just ask. I'm happy to tell. It's a huge part of the soon to be released book.

Yep, dreams are pretty awesome for the most part, though they can be scary, especially when mixed with life or death scenarios and sleep paralysis, which can be a problem in this PD dream world. Yep, there's nothing like being unable to speak or escape in a dream. By the way, weird dreams and the conditions that create them can be a predictor of Parkinson's, and others can be created by nighttime bursts of intense dopamine meds. For instance I can remember a dream several years ago when I was thrust to the ceiling by a demon beast, and I couldn't move away. Mind you, this was before my preoccupation with paranormal writing or show watching. I’m not sure what caused it, but we had an old ceramic statue with a chipped face in the side room (now my sleeping area), so we threw that out, and yeah, life has been better. No sleep paralysis here, though I have neared death and even flew in my dreams since then.

So other than dealing with bad dreams, fragmented sleep patterns, sleep apnea, dream world carryover to this world, and medication issues, there are other things that make “sleeping together” in that not sleeping sense tough for Parkies.

Frequent urination is a biggie for Parkinson’s. We tend to get up at night to piddle. We also may go a lot when we’re awake or feel like we have the feeling of needing to go right after going. This was one of my first symptoms of Parkinson’s way before I had the tremors and need to be diagnosed for them. Obviously, at that point in an average person's life, doctors aren’t expecting Parkinson’s from a late 30-something person, so the flow charts don’t point to the obvious testing in that area. Thus, I don't blame the doctors for a long and misguided Choose Your Own Medical Adventure story that is the flowchart to my diagnosis... even if I'd like to have some of that money I spent on testing back. That said, frequent urination changes the body quite a bit in physical and mindset ways, which add up to some later in this post problems, too.

Continuing on, obviously, our bodies get slower with Parkinson’s, so things don’t function like they used to. Some medications have adverse effects that make orgasm difficult. Even with things like Viagra, this could be like going to Bobby Brady’s fireworks show and finding out there’s a whole lot of hype and no fireworks. Not only are there no fireworks, but it's just a jumble of frustration and what the hell for what once was the "be all / end all of existence." This can happen to both men and women. Depression, body image, exhaustion, and confidence can magnify these things. Many meds literally kill any and all interest in sex at all. It might not be normal, but it is the new normal, and when that happens, it's important to talk about it from a human perspective (as opposed to the person experiencing it is a freak).

It's like on the show Married with Children. Other than mandated trips to the nudie bar with Jefferson and his other friends (where he can look and not touch), Al is pretty much dead to sex other than when Peg uses her wily charms to convince him otherwise, once a season or so. Of course, with PD, there's nothing funny about losing out on these parts of a relationship, but yeah, you get the point. Life changes, and things happen. The cast of Vanderpump Rules  needs to learn to deal with it.

Thus, the idea of Parkinson’s inhibiting people from being wild in bed sexually (while making them off the hook sleeping-wise) is something that many PD people will have to wrestle with, both for themselves and their others, as they confront what intimacy really means. To this, a close, tactile, and loving relationship with hand-holding, cuddling, hugs, kind words, quality time, and small gifts can keep the relationship great (AND I AM SUPER-DUPER THANKFUL FOR MINE!), even if there’s no “Greatest Hits of Mad Crazy Sex as Orchestrated by Barry White” coming for many people afflicted with these situations any time soon.

That said, certain dopamine agonists have been shown to cause compulsive behavior to include sex addiction, gambling, shoplifting, and excessive behaviors in their users. I am on one of these medicines (Ropinirole), but I am not in the 17% of people affected (thank you, Jesus, for the good luck for avoiding that one). I’m also happy for this avoidance since there aren’t too many meds I can go with after having problems with the last two anti-tremor meds. The next level would be a medicine traditionally reserved for older patients, which wouldn’t benefit my doctor’s long term plans for my early-onset Parkinson’s disease. Had a person who was affected by these compulsions not told me about the potential side effects and conditions, I wouldn’t have known, and knowing is half the battle, even if we worry about what COULD BE handed off to us. I should also say I don’t gamble or shoplift or have a compulsion about anything other than playing Charm King and Gummy Drop on my Kindles, but yeah… other than wasting time, that doesn’t seem TOO unhealthy unless I look to invest in a Real Girl who resembles the Gummy Drop Girl. That would set a ripple effect of problems off, and I don't want that.

So that brings us back to the bedroom and what goes on in there. A good night begins with a bed like this and sheets pretty much in position in the morning with pillowcases on the pillows and pillows on the bed. There are no scratches, and I wake up ready and raring to go. However, most nights are the new normal, which is what many of us go through. For me, that includes the ability to jerk the top mattress several inches over. Yep, my dreamworld self is a maniac.

It’s all just another gift from my loving neurological mistress who wants me all for herself and who leaves me frustrated and adapting to all that comes to me.

If you’re interested in this topic, see also THIS and THIS. They can explain other issues that I haven’t seen and help prepare you for your changing body / life. I thank you for reading it.