Think / Able

Think / Able

Friday, January 19, 2018

The Price is Wrong

Let's play a game. It's called "What Costs More?" The rules are simple. Pretend you don't have health insurance. Then think about how much Rasagaline, the generic equivalent of Azilect, costs to keep your brain fighting MAO-B enxymes that think your dopamine is a Walking Dead style zombie. Remember, life is a value choice. Yes, insurance is costly, but what does it cost not to have it? All of these things can be bought, or you can get your medicine for the duration of time listed. What would you rather have?

I won't tell you the price until the end, so this is honors system stuff. It's 10% out of 100 for each answer right.

Rasagaline for 3 months or the basics of a 9-day trip for 2 to 3 cities in Italy, including airfare (on Groupon)?

Rasagaline or a 55" Samsung television to replace our 42 inch one that we paid roughly the same price for in 2009 (from Wal-Mart), should this TV go bad?

Rasagline or what you could spend for a Roger Maris PSA8 rookie card (from eBay)?

Lunch with my wife today for food from a local Italian restaurant (sandwiches) or 1 pill of Rasagaline?

A new set of tires for my Yaris (after they were slashed - before insurance), the item in the best condition on my nearly 250,000 miles 2007 Toyota Yaris or a month of Rasagaline?

Rasagaline for a month or 2 tickets to see Taylor Swift perform from the area in front of the stage at Philadelphia's Lincoln Financial Field (from Ticketmaster resale - lowest price ones with a great view)?

Rasagaline for a month or a Canon EOS Rebel (from Best Buy).

Rasagaline for a day or a trip to the movies in New Orleans to see a nighttime show of The Last Jedi?

Rasagaline for a month or the opportunity to take a 3-credit class in composition with me starting next week?

If you don't go generic, and you choose Azilect, you can expect to pay over $700. Since I had to go to CVS with my plan, and I'm between month 1 of COBRA and switching to my wife's insurance, we're paying out of pocket and getting reimbursed, so our price was $524.

Yep. You read that correctly... $524 for 30 1 mg pills or about $17.50 a pill.

In comparison, CVS charges just over $29 a pill for 25mg Viagra pills. You can see other comparison prices here. Sildenafil started out as a blood pressure medicine, but it has one huge benefit. Hence, the price went through the roof.

Now, for those of you who want to play the no insurance game or think that insurance isn't worth it, you should know this: The same prescription (generic) is about $10-15, depending on which health plan I'm on for a month. This doesn't even get into the piece of mind of knowing doctor visits, lab testing, and hospital visits (like my 2.5 days in the hospital for pneumonia) are covered in part or whole.

Think about it when you trade health for fun or wants.

Think about it when people can't afford healthcare or treatment (yes, I get research costs money, but this is long since past the recoup investments time since it's now generic).

Then when politicians are thinking about whittling away coverage on people's healthcare, tell them to "realize that you can't put sick people out on the ice wish a bushel of sticks to stay warm until the wolves get them like this was a Jack London story" (yet - give the administration time to think of obscure or rarely used "absurd" or "unpopular" or "immoral" clauses to scrap the whole thing and leave those of us with pre-existing conditions up the creek in the name of saving $ while paying back their backers).

Now that you've gone to school for the first day, the answers are:

1) Italy, but not by much, especially since the average price of the med is over $600 as based on pharmacy.
2) Rasgaline
3) The card, but to be honest, I don't see people paying that much for it. I'd say it's more like half of that in the real world - if you can find a buyer not named Dan.
4) The meal
5) Rasgaline - Unfortunately, with what insurance didn't cover, I'll never see that money, even if they catch the teenagers who went "joy-slashing." At least with Rasgaline, I get brain protection.
6) Taylor Swift - another good reason for health insurance since the new album just isn't her, and that's going to be a large, painful part of the show that would cause serious physical anguish and headaches that need medical treatment. Resurrect the old Taylor from the dead.
7) Rasgaline
8) Rasgaline
9) Rasgaline - It was $16 a piece to see that movie (not including food and drinks), and I don't even get the DVD (not to mention it wasn't as good as Rogue 1).

10 ) The class, but not by much. This is one of the best things about community college (and it transfers)!

Wednesday, January 17, 2018

50 of Life’s Greatest Truths: The Things I've Learned about Being Happy over My 46 Years

1.      Love is a good thing. Don’t ever be afraid to share kindness, compassion, and words that tell people how special they are.
2.      Live for the good things in life that don’t hurt other people. Dream big dreams to find these things that are on the “to do list,” but don’t get so caught up in the future than you forget to "be here now."
3.      Rewire yourself and your defenses to be strong before the flood takes out the levees. This is all covered in the (James) Stockdale Paradox (Stay firm in your belief that you will prevail in the end; Confront the brutal facts around you).
4.      Choosing to live life is a wise decision when the choice is always between positive and negative. Never be anything other than you, no matter what befalls you. When you have the chance, smile big inside and out, even if your face can’t always show it (because of issues like the Parkinson’s mask)

5.      We should respect our own talents and abilities as we seek to impress each other and ourselves. We should utilize these talents in all we do.
6.      Never look down to find your heroes. Even if people are shorter than you, a different gender, a different religion, younger, a different color, suffering from an illness or condition, or if they believe in something else than us, their learning has lifted them up to greatness and experience. Whether this is Adam Bender playing sports on one leg, Malala Yousafazi recovering from being shot by the Taliban for daring to demand education for young girls, or Little Zen Monkey climbing the rock wall before she could walk, everyone has a lesson to give. Breathe it in. More than anything, respect people who keep their faith through tough times.
7.      Never stop learning and never discourage other people from learning. Read for pleasure as well as to learn. Visit places where you can experience and learn.
8.      Respect those people who stand up for what’s right to lead others through tough times. Remember, a leader is the person who sets the example and the tone of the nation. Do you want a hater or a uniter in charge? Respect those who help others keep the faith and never give up. That’s not an easy task, but it is the most important task.
9.      Being among the flowers, waterfalls, vistas, and panoramic landscapes is a great place to be in order to recharge our batteries. For this, respect those who see the beauty in the world and fight to preserve it for all of us.
10.  Respect those who have courage to get through adversity, whether it can get better or whether it is debilitating.
11.  Those people who have problems with everything care about nothing.
12.  I wouldn’t want to live in a world without music.
13.  Don’t ask questions that you don’t already know the potential answers to.
14.  If you ask someone to give you advice / help and you don’t pay for it, respect what this person says / does, especially if they respond with all that they are.
15.  “Thank you” is 2 important words.
16.  “I’m sorry” is 2 other important words.
17.  Respect the leaders, peers, and co-workers in your field. Don’t ever think you know better than everyone else around you. If you’re the anomaly, there’s probably a reason, and it's not a good one.
18.  If you have an opportunity to commend someone for his / her work, do it. If you have a chance to tell said person’s supervisor about what’s right about that person, do it. If you have a chance to put out a glowing recommendation in public, do it. If you have the opportunity to slam someone for his / her mistakes, think about it first. Is it really a wrong or did you not get what you wanted? Then, think about this quote: “Forgive us our trespasses as we forgive those who trespass against us.” If you’re still wronged, tell how to fix it in the response and say why it’s wrong. Don’t trash a person’s life to seek revenge. Remember, punishment is about rehabilitation, not ending a person. Universal ethical violations are a different game altogether. Like many of you, I’m working on this.
19.  Respect those who play the game to win every day until they physically can’t play anymore.
20.  Everything we need to know about life is conveyed in Disney Pixar, Dr. Seuss, and Victor Frankl's Man's Search for Meaning.
21.  Students should be required to take a course in positive quotes, where they are required to lie in bed contemplating the greater meaning of thoughts from Michael Jordan to Maslow's Hierarchy of Needs to Randy Pausch's Last Lecture to Neutral Milk Hotel to Walt Whitman's "Song of the Open Road" to positive Facebook memes, religious and philosophical works, movies, and song lyrics. It would be a 15-week undergraduate thesis class, where each week would require a 5-page paper and mandatory participation in groups and in front of the room discussing how 10 different quotes could be applied to life. The final would be a 10-page paper on how one quote defines life. It would be mandatory to graduate with any degree.
22.  The best class I ever took was called How to Let other People’s Love and Wisdom Help You 801. It's still teaching me how to battle back against Parkinson's.
23.  Shortcuts now = more work and money later
24.  We don’t get anything out of succeeding with the easy things or having our victories given to us like participation trophies, so we need to remember that we need to challenge ourselves whenever possible.
25.  “Getting to the top is optional. Getting down is mandatory.” Ed Viesturs
26.  “I’ve failed over and over. That’s why I succeed.” Michael Jordan
27.  “Don’t think. It can only hurt the ball club.” Crash Davis in Bull Durham
28.  Do THINGS That TERRIFY You!" Emma Watson
29.  "You're only as sick as your secrets." Michael J. Fox
30.  “Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place, and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That's how winning is done! Now, if you know what you're worth, then go out and get what you're worth. But you gotta be willing to take the hits, and not pointing fingers saying you ain't where you wanna be because of him, or her, or anybody. Cowards do that and that ain't you. You're better than that! I'm always gonna love you, no matter what. No matter what happens. You're my son and you're my blood. You're the best thing in my life. But until you start believing in yourself, you ain't gonna have a life.”  Sylvester Stallone as Rocky
31.  “Don’t do stupid stuff.” Barack Obama
32.  "I would rather be ashes than dust! I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot. I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet. The function of man is to live, not to exist. I shall not waste my days trying to prolong them. I shall use my time." Jack London
33.  “Folks are usually about as happy as they make their minds up to be.” Abraham Lincoln
34.  “The more you praise and celebrate your life, the more there is in life to celebrate” Oprah
35.  To love another person is to see the face of God.” Victor Hugo
36.  "Remember your dreams and fight for them. You must know what you want from life. There is just one thing that makes your dream become impossible: The fear of failure." Paulo Coehlo
37.  “Life is not measured by the number of breaths we take, but by the moments that take our breath away.” Maya Angelou
38.   “A life is not important except in the impact it has on other lives.” Jackie Robinson
39.  “Eventually, I sickened of people, myself included, who didn’t think enough of themselves to make something of themselves- people who did only what they had to do and never what they could have done. I learned from them the infected loneliness that comes at the end of every misspent day. I knew I could do better.” Mark Twight
40.  “A man who views the world the same at fifty as he did at twenty has wasted thirty years of his life.” Mohammad Ali
41.  “At some stage you believe you’re too exhausted to carry on. Then you take another step up and you realize you’re not too exhausted. You can take another step, and another. It’s your mind that’s exhausted, not your body. You realize you’re alone, miles from anywhere and nobody is going to help you. Only you can get yourself up the mountain. It’s knowing this that makes you think you’re too tired to carry on.”  Mick Burke
42.  “Even after all this time the sun never says to the earth, "You owe me." Look what happens with a love like that. It lights the whole sky.” Hafez
43.  “If you ask me what I came into this life to do, I will tell you: I came to live out loud.” Emile Zola
44.  Most things I learned about success, I learned on the trail when Don Lester and his wife Theresa helped my wife get to medical help after taking out her ACL (Pushing myself to get through / You don’t know your limits until you’ve found them / Helping others in need / Inspiring others through success / Having a job and / or skill that matters is everything / Leading through confidence, professionalism, and knowledge / Sticking it out as long as it takes / Celebrating others who push it up and over obstacles / Seeing the beauty in the world / Being thankful in public and professional ways / Behind the scenes work is essential or you’re going to be bushwhacking / Preparation is everything).

45.  But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. So we have come to cash this check -- a check that will give us upon demand the riches of freedom and the security of justice. We have also come to this hallowed spot to remind America of the fierce urgency of now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice. Now is the time to open the doors of opportunity to all of God's children. Now is the time to lift our nation from the quick sands of racial injustice to the solid rock of brotherhood.” Martin Luther King Jr.
46.   “Man cannot discover new oceans unless he has the courage to lose sight of the shore.” Andre Gide
47.  “You are your most valuable asset. Don’t forget it. You are the best thing you have.” Gary Paulsen
48.  “A venturesome minority will always be eager to set off on their own, and no obstacles should be placed in their path; let them take risks, for godsake, let them get lost, sunburnt, stranded, drowned, eaten by bears, buried alive under avalanches- that is the right and privilege of any free American.” Edward Abbey
49.  “Faith is the ultimate passion in a man.” Soren Kierkegaard

50.  “You're an interesting species. An interesting mix. You're capable of such beautiful dreams, and such horrible nightmares. You feel so lost, so cut off, so alone, only you're not. See, in all our searching, the only thing we've found that makes the emptiness bearable, is each other.” Carl Sagan

Monday, January 15, 2018

Trades, Value Choices, and Big Decisions that (HOPEFULLY) Pay off in the Long-Term - Baseball as a Metaphor for Medicinal Decisions

            As a baseball fan, the middle of January should bring about the signs of the coming season. The baseball preview magazines should be telling fans what they can expect from their teams, but this year, pretty much nothing was done. If you’re a casual sports fan, you probably wouldn’t recognize the names on the free agent list this year. The Cubs’ former Cy Young winner Jake Arrieta is still unsigned, and so is former World Series hero Eric Hosmer. Yu Darvish’s lousy World Series and injury history has left him without a team. JD Martinez is still hoping for a big payday after his Tigers / Diamondbacks statistics, and so is slugger Mike Moustakas, but teams paying out for offense seems to be at a premium in an era of stats crunching and years of control within the league minimum salaries for time in grade. Sure, the Angels paid for pitcher / hitter Shohei Ohtani, but that seems to be more about his potential uniqueness in ability with a bat and a fastball as well as his popularity coming from Japan to the United States. The Rockies paid for Wade Davis’s relief pitching abilities, but other than that, nobody seems to be paying for a person who can’t sell a jersey at a mall store anywhere in the country. Other than some low-level, short-term free agent signings, the biggest moves have come in trade with teams like Tampa Bay calling the season before it starts by moving Evan Longoria to San Francisco. Yesterday, the Pirates followed suit by shipping Gerrit Cole to Houston. Derek Jeter’s Marlins opened the true offseason for business with a fire sale for anyone with a name and value. Now, Marcel Ozuna is a Cardinal, Dee Gordon is a Mariner, and Christian Yelich is on the trading block. Giancarlo Stanton’s humongous $30million per year went back to Jeter’s beloved Yankees for pennies on the dollar and Starlin Castro, but at least they took that money out of the revenue that they had to spend, so the Marlins can reinvest in players who are cheaper and offer 6+ years of control before the first mega-bazillion dollar free agency testing moment comes.
            And that’s what baseball and life is about: TRADES, VALUE CHOICES, AND BIG DECISIONS THAT (HOPEFULLY) PAY OFF IN THE LONG-TERM.

            Yes, it seems that Annie Savoy was right (in the movie Bull Durham) that “bad trades are a part of baseball,” but bad trades can be a part of everyday life, too. As anyone with a medical condition knows, there are side effects to every medication that we take. Doctors tell us about these potential problems so we know what to look for (after all, we don't want to trade Frank Robinson for Milt Pappas). Pharmacists tell us about these and sometimes call us to the side when we get our medication so that they can protect us from adverse reactions that could have slipped through. It’s nice to have this safety net when the reaction comes up from what the doctor knows or what the system tells him or her.

This is what happened to me, as my doctor said it would when I followed his directions and mixed Lexapro and Azilect. I’ve been OK with the combo due to low dosage (as he said I would), but to trade for Parkinson’s protection at short stop and anti-anxiety effects as an eighth-inning set up man, I gave up casually drinking beer, low lows, some amorousness, and money. Some of these are better trades than others. Playing beer at third base was a situational game that only occurred in later innings every six weeks or so for an inning or two at a time. I rarely miss it unless I see Yuengling beer at a restaurant or everyone else has a beer to hold at family gatherings. With health insurance, the money for the 2 medications meant I had to cut back going out to eat once or twice a month. This trade lost me nothing in value over replacement player, so I just made do with what I have. The biggest causation effect that comes from this is that one Appleby’s waitress comes up short in her tips one night a month. I’m positive someone else is coming to fill in the position. As for amorousness, sure it was a solid first basemen that looks good on paper, but it was aging rapidly. Besides, when it comes to wins above replacement, there are other options available to keep myself in the game, especially when the real nature of the game that’s being played is to hold off the body’s immune system from throwing at the heads of neurons that have been damaged by viruses and being there at my best physically and mentally so that I can win at the game of life.

Personally, I’ll make that trade any day of the week and twice on Sunday.
Other trades bring worse effects. I traded money and a player to be named later for Amantadine, and while I didn’t mind trading sleep for it, the livedo reticularis rash (see below) had to go. Hence, my team’s general manager went with trihexyphenidyl, which was open for acquisition from the free agent pool, and I got cognitive issues in a very short period of time. That's not even counting how it was only carrying a .294 on-base + slugging at the time.. At that point, I counted my losses and gave this medication its unconditional release for the purpose of waivers. I’m sure he’ll work well in another system, but around my team, he was a clubhouse cancer causing me to forget in mid-sentence. I couldn’t chance the game with him at the plate or on the mound. I need a pitcher who knows what to throw without a catcher going out to the mound multiple times an inning. I need a batter who can put the ball in play and not strike out looking 40% of the time.

Now, ropinirole is my go-to workhorse. Some people have compulsiveness issues with it, but I don’t. I manage it quite well, taking it before the end of the previous game, and it takes me through the next day’s outing with a quality start every time, though it still can’t excel against conditions in the extreme heat and more tremors in the cold.

Fortunately, I knew that going in. 

Some people are enticed by big names on the market because they have big names. For years, this was the Yankees. Now, it's the Red Sox, who are trying to quit cold turkey. These people set themselves up for the Scott Boras clients of the world. These are the Otezlas, Eliquises, and Abilifies of the world that offer big name rewards via the media for the first 30-40 seconds of their promotions, but then come the side effects that can range from feeling like you want to die to near death to paralysis to death. I don’t say this to pick on them. Lots of medicines offer the same problems. I could list any of them. These 3 commercials just end up on television a lot more often than others. You've probably seen them, too. The catch is, this is America, so instead of going to the doctor to diagnose a problem, you go to him with a self-diagnosed problem that you want treated with a brand-name medicine. I'm sure that makes sense, and yes, it does pay back for years of research, but... WEBMD self-doctoring anyone? Yeah Internet and capitalism!!!

And by the way, disclosure here, I really can’t deal with the Otezla people doing their thing with Katrina and the Waves in the background. That’s a trade I couldn’t make, even if I had plaque psoriasis and it needed to go.

So in the end, the message here is that medicine is the following:
1)      A decision to be talked over with the doctor - not the Internet only.
2)      A potential reward.
3)      A potential risk.
4)      Something that might not work, though it might not create risks.
5)      Something that takes time to get into the system to work (for example, “some people see results in as little as 1-2 weeks” but most are longer).
6)      A trade of benefit for things we might need to give up to prevent risks (for instance, the whole “If you’re thinking about getting pregnant…” thing).
7)      Not for everyone (for instance, the whole no birth control pills for smokers risk)
8)      A problem if stopped early (for example, when I removed trihexyphenidyl, my symptoms were exacerbated).
9)      Something we need to know when and how to take as something more than a number of pills per day (At bedtime? After meals?)
10)  Something that is habit forming.

I’m not afraid of Big Pharma. I’m not sold on alternative medicines. I want the best bang for my buck when it comes to the game of taking the ground lost in my war with neurological disease back from Parkinson’s, and I’m sure you do, too. That’s why we ask questions. While I have ZERO interest in medical cannabis, I still asked my doctor about it to find out his professional opinion, and I was told that it wasn’t enough bang for its buck. That answer works for me. Besides, I know the way it works. I’ve been sent the video many times, and I watched it, but I’m not sold on stopping tremors with those side effects and costs either so as to obtain their benefits.

In the end, what we take and don’t take medicinally are our value choices, as are the things we’re willing to give up. Sure, there are things that Parkinson’s will take from us, but in the meantime, this id-driven selfish brat is taking them back by any means necessary.

Long live the stats and magical powers of ropinirole and Azilect, which will carry us through to a World Series trophy in late October. When it comes to the game, better living through chemistry, nutrition, and value choices.

Friday, January 12, 2018

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.