Think / Able - and Check out My Parkinson's Facebook Page

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Wednesday, July 18, 2018

Sleep Anxiety: Yet Another Hidden Symptom

My wife and I are driving down a winding road in my new to me used car. It has replaced my beloved older car, which “died” saving me from an accident. Normally, the ride is a pretty smooth one, but for some reason, I am not able to hug the curves carefully enough, and my car goes careening off the road into a lake.

As it begins to sink, we hurry to keep it afloat. There is no way that I can lose 2 cars in about 4 months, so I must do everything in my power to keep it from sinking to the bottom of the lake. As I do this, I keep pinching myself to see if this situation is real or a dream. I’m pretty sure it isn’t actually happening, but it feels real. Nevertheless, for what I can’t feel in the lack of sensation my pinch creates, the dream is not ending. The car continues to sink, and I can feel the weight of this moment coming after me as it goes on and on.

As time goes on, there is a palpable feeling that my car is definitely sinking, and I'm truly in a world of not-so-good-ed-ness. This is getting scarier and scarier as I try to save my car and pinch myself to see if the madness is real.

Eventually, the dream does end, and I am safe in my bed, but all too completely aware that this is another one of my Parkinson’s dreams playing tricks with me.

If the commercial placement of hallucinations in the life of a Parkinson’s patient is any indication, then people are becoming aware of this side effect in the lives of people with said neurological condition. While it’s not a stretch to think of people with neurological conditions experiencing these issues of things happening that aren’t happening (for instance, ghostlike movement off to a person with PD's sides in an otherwise empty house OR paranoia regarding what family members are “doing” to them), society often blanks out on the way dreams affect Parkinson’s since they tend to be isolated from the slumbering Parkinsonian.

All things considered, why would they know?

If I were to go back to college now, I would love to work on a huge project with Parkinson’s and REM Sleep Behavior Disorder. It would be great to do an independent study where I could look into issues of hallucinations, anxiety, dreams, and visions regarding neurological conditions.

I know what you’re thinking: This dude needs serious help.

But it’s true. I love trying to sift through the dream symbolism and surreal nature of my dreams to decipher what they mean. These include winning big at a casino (compulsive gambling is a rare symptom of Ropinerole and other meds like it), being afraid of my friend driving wildly, ending up at Sandals for a romantic tryst as part of a comedy movie, going to a concert with Pete Yorn rolling around on the ground singing songs that sound more like Sun Kil Moon than him (after seeing Blink 182 and the Offspring collaborate as skateboarders go wild on a halfpipe), waking up and feeling an earthquake shake through my room, flying above a slot canyon on my command, searching for a lighthouse in Britain (which I never get to), and fighting people to the death with makeshift spears, which culminates with me actually punching at my antagonists.

What does all of this mean?

Well, for one, if it involves out of the dream punching, kicking, and scratching, then it means REM Sleep Behavior Disorder is present. This is one of the first signs of having Parkinson’s. One longitudinal study with 29 patients found that almost 40% of those surveyed (a very small amount, mind you) had Parkinson’s diagnoses in a little over a decade. That’s definitely cause for more research.

For two, it means that when we dream, we can feel the anxiety of our lives pushed into dreams, though this isn’t always true. Sometimes, it’s just smoking cessation meds, blood pressure meds, or Parkinson’s meds creating a weird situation in the brain. Insomnia or sleep deprivation can also cause nightmares, but in other cases, anxiety can manifest itself into our unconscious world of sleep problems.

For three, it means that demons are trying to possess said person. In this case, get the patient to a nunnery or monastery, as appropriate! Actually, you’d do better to call Father Karras. He or the Warrens are your only hope.

But since this is reality for a Parkinson’s patient (gotta love our dopamine level fluctuations), it could be a little bit of 1+2. Many of us tend to deal with depression, angst, feelings of meaninglessness, loneliness, loss of independence, communication problems, suicidal ideations, worry, aggression, nihilism, absurdity, crisis of faith, and rejection. Isn’t it obvious that we would feel anxious in both sleep and real life?

Add to this a bizarre cocktail of medicines that could make Timothy Leary stare wide-eyed, and you have a recipe for problems.

This is not always true, but the Mayo Clinic feels that when nightmares keep people from sleeping or wanting to go to sleep because of their intensity and frequency, then they should see a doctor, especially if this intrudes on their daily life. This article at Psychology Today lists a lot of helpful hints on controlling dream problems. These include staying on a schedule, relaxing, and things to avoid (video games and caffeine, for two).

For me, I’m not scared to dream - even when they get surreal or wild. I don’t hurt myself, and my wife is now a bedroom away, so I can’t hurt her anymore. Here, I should clearly note that I would never knowingly hurt my wife, but because of pillow stripping / throwing and scratches in the past, I had to accept this situation. I always say that it’s amazing what we can accept to stay alive, but this punishment was a bummer. Sometimes, a sleeping buddy just wants to touch toes to toes out of a feeling of, “Yeah, I love this person next to me.” It’s not meant to be some bizarre fetish either. It’s just, “I’m connected to you.” Things like that and holding hands, being in the same room, casual “I love you’s,” and hugs / kisses when leaving and coming home are the true intimacies.

 Nevertheless, those dreams… what they can’t take from us or prevent us from doing.

As I’ve written about, recently, I had a CPAP machine prescribed to me for treating sleep apnea. Nevertheless, I would tear it off in a half hour to three hours each night I wore it. I only remember one night that I took it off. Everything else… a mystery.

So far, in my Parkinson’s journey, this is my only treatment refused. There’s no point taking more anxiety / Parkinson’s meds when I’m taking 3 already. I know I’m a health helper person, but sometimes, we have to make a value choice. Do I want another med and its potential side effects so I can try to use the CPAP machine? Will I be OK without the CPAP machine if I choose not to use it?

I guess I'll find out soon.

In the meantime, bring on those dreams.

Sunday, July 15, 2018

25 Songs for July

If I don't post these soon, it will be August!

1. Tonight, Tonight - Smashing Pumpkins

2. Jesus Walks - Kanye West

“And I don't think there is nothing I can do now to right my wrongs

(Jesus Walks with me)

I want to talk to God, but I'm afraid because we ain't spoke in so long
(I want Jesus)
God show me the way because the Devil's tryin' to break me down
The only thing that I pray is that my feet don't fail me now”

3. Paranormal in the West Country (1, 2, and 3) - Julian Cope

4. Too Fast for Love - Motley Crue

5. Thunder (acoustic) - Imagine Dragons

6. In My Blood - Sean Mendes 

7. Thermals - Remember Today

8. Iron Maiden - Infinite Dreams

9. Eminem - Lose Yourself

10. Juicy - Notorious B.I.G.

11. Sick to Death - Beatles Chemistry

12. Learn to Fly - Foo Fighters 

13. Zombie - Bad Wolves (Cranberries cover)

14. Over the Mountain - Ozzy

15. Highly Suspect - Little One

16. The Streets Fell into My Windows - The Red Paintings

17. Very Loud - Shout Out Louds

18. It's Thunder and It's Lightning - We Were Promised Jetpacks

19. Talking Straight - Rolling Blackouts Coastal Fever

20. The Man of Metropolis Steals Our Hearts - Sufjan Stevens

21. The Rain - The Cult

22. INXS - Heaven Sent

23. Charlatans - Weirdo

24. KLF - What Time is Love

25. Screamin' Jay Hawkins - I Put a Spell on You

Randal "Tex" Cobb Blues

            Many people with Parkinson's are encouraged to participate in Rock Steady Boxing (and yoga, dancing, active hobbies). The point of this is to increase strength, decrease rigidity, gain balance, achieve confidence, and meet friends. People come from a wide variety of places and backgrounds to participate in hitting the bags. At no point in this endeavor are people encouraged to go medieval on one another, let alone reenact Mike Tyson’s dinner reservation with Evander Holyfield. While taking fist to leather relieves stress and frustration (an added bonus), it’s not meant to mimic hurting another person. It’s meant to give us a path away from sadness by putting us in control of our own set of interactions with Parkinson’s.

            First and foremost, at all too many points in the lives of those people who have it, Parkinson’s is a cheap-shot “heel” from pro wrestling, who doesn’t play its game fair. For others, PD plays the role of the superior heavyweight champion. Knowing what we are up against allows us to prepare our fight against its.
            Take Randall “Tex” Cobb, who went fifteen rounds with Larry Holmes. He lost by decision, but he never went down. To me, he is the ultimate “Won’t Back Down” metaphor.

            We see this in injured runners like Derek Redmond or softball players like Sara Tucholsky. 

I saw this when my wife pushed herself 2 miles through the desert after an ACLinjury. All of these people were aided by others, but isn’t that life? We need other people. What’s more, if they can, I can (or at least come close).

1.      To understand the Tex Cobb Blues, we must learn that there are no trigger warnings in life. Parkinson’s symptoms will make you and yours cry. We can choose how to approach them, but things like incontinence, cognitive issues, and loss of independence are coming for many of us. We need to be ready for them. There’s no rug to hide under when the freezing hits town. If we follow Tex's advice, we train to hit back and take the pain.

2.      In between the rounds of our life, we can go for hugs, high fives, and encouragement. We need love, respect, and appreciation. Our caregivers are huddled as a team to keep us moving. Their empathy is a great thing. People need to be in our corner rooting for us. We need to be in our corner. If we can balance the need for strength and the ability to let out our emotion, we'll be OK.
3.      We need to fight this fight round by round. This means, our game is to focus on today instead of worrying about tomorrow. I can’t say if the aliens from Independence Day are coming tomorrow or not, but I can say today is a nice day, so I should smile and enjoy it. Remember, the best revenge is living well.
4.      Remember that line in Caddyshack where the judge tells the grandson, “You’ll get nothing and like it?” Well, that’s how PD talks to us, except it's not funny when PD does it (goll dang, Ted Knight and Rodney Dangerfield were great in that movie). We can’t ask it to be gentler since it’s not listening. It’s coming to take our hobbies away. It doesn’t bargain. It just does. Thus, if you can find interest in playing cards instead of swimming, do so. It’s all about how we see the hand we’re dealt. 

5.      When I went to Basic Training, the first thing they asked us was, “Who has promises in writing from a recruiter?” If you didn’t, you were out of luck. Just like in Disney’s Up, we have our Adventure Book. What we do with it when life gives us lemons is up to us. Thus, I want to go with my wife to Bora Bora someday, but there is no guarantee. I wasn’t promised a rose garden in writing, so maybe I need to go out of my way to enjoy the petunias, daffodils, mums, and irises that I find along the way.
6.      Not every round is going to be pretty. In fact, there comes a point where we're going to hate and resent it all. There will come a time when we’re not going to listen to any more medical advice because we're sick of being diagnosed with some other co-morbid condition or be told that we need yet another medicine that will affect our mental / cognitive / behavioral life in the name of controlling some other symptom or condition. Here, there comes a point when we need to vent safely (scream at an inanimate object, hit a punching bag, journal, etc.). That's OK. It needs to come out. Sometimes, we’ll be like the crew in Apollo 13, stripping off sensors to exert authority as we refuse a test or procedure. For Jim Lovell's moon landing crew, that makes sense. They're stranded in space, unsure if they'll land. Who gives a hoot about vital signs when they have to get through lottery odds to have a shot at re-entry. While the team of doctors at Houston freaked out, Ed Harris' team leader let them vent. It was a very human understanding. Get it out, and get on with life. Like them, we get sick of being prodded and poked and analyzed objectively and subjectively. We see the final conclusion, so we choose to do things by expressing our own dignity. Many times, it's just momentary frustration; however, sometimes, it’s just refusing to be another medical condition in an endless stream of conditions. Remember, it’s not quitting if we’re committed to what we believe in, even if it’s only parts of the whole. That said, before quitting, ask your doctors for advice. We can't just pull ourselves off of some meds.

7.      If you’ve got energy left, then it’s possible to win the match. Muhammad Ali didn’t win his fight with Sonny Liston until the end. Our cure isn’t coming this month, but we need to hold on for when it does. Until then, we’ve got endless potential. This, to me, is the story of Camus' Sisyphus. If there's a possibility, there's hope. Set yourself up for a chance to win. Just like in NASCAR, a racer can lead the most laps, but the only lap that counts is the final one. For this, Trevor Bayne will always be a past Daytona champion.

8.      Remember, even if you’re giving Parkinson’s a what for and you’re wondering why badthings happen to good people, then just remember Samuel Beckett was right. “Ever tried. Ever failed. No matter. Try again. Fail Again. Fail better.” There is always hope. Don't lose faith in your philosophy / theology. Find meaning in the suffering. For me, that's sharing my story. Like Cobb, I'm taking the hits, but I'm still standing. I don't like the other choice.
9.      What’s more, there’s still a lot of love to give and receive. If you can still express and feel love, then you’re still alive, no matter who is winning the fight.
10.  In the end, it’s not about being tough 24/7. Nobody can play that game. However, by confronting the reality of what we’re up against, we’ll know how to fight it better. Remember, if you need help, there are plenty of people who are willing to help you (in real life, online, and around the corner. Keep believing! I'd like to think that's what Cobb felt when he transitioned from boxer to actor in Nicholas Cage's Raising Arizona.

Keep your guard up and swing back whenever you can!

Saturday, July 14, 2018

Summer Musicals for Sweltering Days

Summer is a super-duper time to be out and about. While I like hiking, I realize that this season demands  less-challenging hikes. Most times, it's about being indoors and going to see a musical like The Hunchback of Notre Dame with my wife because it's too risky to face the exposed heat. 

With regard to my experiences with Mr. Hugo, I couldn’t read the French names in Les Miserables when I was in 7th grade, so I tried to abbreviate them. Too many similar abbreviations led to me not finishing that book, and uh, yeah… I’m a slacker.
A few years ago, my wife and I went to a performance of that show in Lancaster, Pennsylvania, and I learned that “to love another person is to see the face of God.” I also learned that our local theater (the Fulton) is spectacular. I bet yours is, too. This theater is huge, so you would kind of expect off Broadway, but to us, it’s hard to see the difference (even for my wife who has “experience” with this stuff). Even the Ephrata Performing Arts Center, our local town playhouse, is always spot on for the couple hundred people who can fit in the room.

As a result, you don't need to travel to the Big Apple to enjoy musical culture, so consider an escape from the heat in someone else's air conditioning!
Our previous favorite was Beauty and the Beast. This time, we debated if the 100+ person cast took Hunchback over the top. After all, it included a huge choir behind 5 huge bells and a 3-level almost 30-foot bell tower. In the end, my wife, my mom, and I decided it was wrong to compare 2 next level awesome shows.

I get that musicals aren’t everyone’s cup of tea. My dad tried West Side Story a long time ago, and he still reminds my mom he did. Nevertheless, he feels musicals are a punishment, like “the cooler” in The Great Escape.
Prior to meeting my wife, I only saw a few musicals / plays. I went out for Annie Get Your Gun to be with a high school girlfriend. I saw Shakespeare’s Twelfth Night with a former girlfriend. Finally, I saw Aristophanes’ Lysistrata because I like Greek plays. At least I enjoyed the latter 2!
It took my wife to convince me that I could be a “musical guy” (sometimes), too.

Hunchback shows universality on many levels. The evil of Claude Frollo was played with bright red lights to portray him as the devil. Here, he personified a "Me, Too," villain as he lusted after Esmeralda, offering her unethical choices or death. I have to say that even though this was a Disney play, the idea of possession of another person, with or against their consent was played off as the crime against humanity that it is.
Additionally, Quasimodo’s true inner spirit wrestled with his outer disabilities and lack of confidence in grand fashion. Occasionally, he broke through to show true strength. What's more, he fell in love with Esmeralda, who was ostracized for her beauty. 
Additionally, the quest for identity wages as the Gypsies battle for the right to be. In a battle against tyrannical control, the only hope is to show the world that they matter.

Times haven’t changed in 500 years. Heroes haven’t changed either. No matter who we are, we have the chance to let our voice be heard. The powerful statement of love that culminates this experience is not a Disney kid’s story, but instead, it is 2 people from 2 different worlds who have found one another to be 1.
No matter what group we are a part of online, it's a good place to be. However, we need to mix and mingle with the world, too. We may not be as good at belting out tunes as Rebecca Ferguson (Jenny Lind) in The Greatest Showman, but we have the right to speak and be heard by the world. Even if we find our voices growing quieter, the right people will stop and listen. The point is to open ourselves up to the world. Never let a person make you feel inferior, unworthy, or voiceless.

So on these 100° days, when you have the choice of a day out at a minor league baseball game, a walk in the park, or being in the air conditioning, ask yourself if you want to risk Parkinson’s heat injuries or needing to drink gallons of water to equalize hyperehidrosis’s evil powers. I may like baseball, but I love being 98.6° for the people who love me.
You do, too. Protect yourself this summer with smart temperature-related choices.  If musicals aren't your thing, consider going to the movies or playing fun games with others. Whatever you do this summer, have fun with it!

Thursday, July 12, 2018

The Other Best Day of the Summer

As we all know, August 26th is the best day of the summer because I get to indulge other people's need to give gifts with the day I was born (I kid, I kid), but today is a fantastic day.

It's the day the stargazer lilies pop their heads!

You're welcome.

Here are some from years past.

Here are some black and whites.

Here is my favorite spring flower... our former peony tree.

If you need an excuse for flowers, I can't help you. I just can't. Let's face it; flowers brighten the day of anyone with a soul. 'Nuff said.

So whatever you need to do in order to absorb them and save them from the dog days of heat, do it!

Except hostas with alien antennas... chop them back!!

And bid a moment of silence to Bob Marley's hair

While being kind to your furry friends.

Tuesday, July 10, 2018

Fortune Cookie Philosophy

Last night, my wife and I were out walking, and she asked me about finding the meaning of life. As someone who feels he has ran into two major satoris (the decision to be a teacher and the decision to advocate / educate for Parkinson's) and other divine intervention, it seems like I know how to get there, but the truth is that I just know it when it's happening. I know enough not to turn it down (like my friend's son did when he was released from jail and he was offered a ride home from a priest who offered him a job, an apartment, and life coaching - how do you miss that sign or reject that opportunity?). However, I don't always know how to pull it in when its asking me if I appreciate its personal favorite qualities. Then again, sometimes the things we regret never obtaining are bullets we dodged (i.e. the job I applied for where the boss said, "I'll never be satisfied with what you do. Do you still want to work here?" The right answer was no, but I said yes. The interview was horrible. Now, I'm thankful since A) I would have loathed him and B) the for profit school is out of business).

This made me think about my attitude toward life's hardship as an opportunity as opposed to a problem. That made me think about a graduation card I received almost 2 decades ago with this quote from Soren Kierkegaard, who is the bee's knees of existentialism for me (although Nietzsche has his one liners and Sarte has a couple good hits, I never thought much of Heidegger - then again, who thinks about these things other than some oddball like me or an egghead in a lecture hall? That said, The Simpsons had "Camus can do, but Sartre is smarter" and there was a Kierkegaard quote / joke in the first Wayne's World - see below).

Here, I stated how I believe that living a good life and a genuine life will lead to opportunities, but it has to be altruistic - not to get rewards. I'd like to think I have examples, but they may just be coincidences. Who knows? What can possibly go wrong with being a better person, spreading kindness, and not giving in to the negative? In the meantime, I'm also going to go on living a good life and offering Fortune Cookie Philosophy and Kierkegaard quotes.

If you contemplate life and the meaning thereof, then what makes you sure you can figure out who we are or how to find the meaning of life? Have you learned a strategy? Have you found a truth? Is it some grand win, a random series of aligned paths that will take us to where we were meant to go and make us who we are meant to become? If so, what's the difference between relying on playing the i-Ching (which Steve Jobs had nothing to do with) and the one-armed bandits at the casino?

Like tarot cards for the Tao te Ching sect, everything comes down to a determine the future with hexagrams and lines. Just like palm reading, the interpretation of the future is only a pattern away. Whether it's on turtle shells, hands, or the well-lighted path of the wisp's in Disney's Brave, it's there.

Just like with Monty Hall on Let's Make a Deal, we are left with a choice. Which door will it be ? 1, 2, or 3? Do we win the car, vacation, or booby prize?

Is the answer one of free will or determinism? Can we ever go back for the doors that we missed? Is there a trick to answering this question?

What do I do? Do I dare disturb the universe (T.S. Eliot's "Love Song of J. Afred Prufrock" - goll dang, if that isn't one of the 5 best poems ever)?

With a kiss on the lips and the fingertips, we make our choice on the machine. What option and possibility are we led to? Does a number that looks bigger when it comes to multiple chances actually mean more than a lower number, whose one opportunity to come up big does? Is the possibility really infinite and left to mathematical randomness? Does chaos play a role in how we bring the machine of change to its knees or in how it empties our reserves and leaves us hopeless? Then again, is it all able to be based on a system to trick or manipulate the possibilities with confidence guiding the way?

Are our pre-game and in the midst of the contest routines able to determine our outcome based on what we do and don't do? Must we adjust our batting gloves every time we face a new pitch?

There are so many opportunities and so many advisers. Perhaps all we need to do is believe. Then again, maybe it's about knowing someone. However, it could all be done with regard to where the planets align. Nevertheless, I can't fail to acknowledge that many "true believers" feel there is no prosperity gospel, so just fall into line with Jonathan Edwards' plans for "Sinners in the Hands of an Angry God" or else. All things will be as they are meant to be in the next life. This fortune game we are attempting to play here on earth is rooted and evil, when we are meant to be about obedience or a life of damnation.

What outlook is best for you? Would you rather be to led to the Promised Land or seek it out, knowing only stories of the gold of the fabled lost city of El Dorado? After all, without evidence, it is only legend. Step forward in a leap of faith. Your fortune is waiting for you, or maybe not, Indy. What can you do except give in to the baddies to save your daddy?

With that, there are jungle snakes and predators looking to devour you. It's one or the other, but unless you pay to play, you never had a chance for winning everything, let alone getting a bit of anything. You might be safe, but you'll never know what it was worth to feel the exhilaration of taking a chance to win it all.

Besides, if it's there, it's meant to be discovered. Perhaps it's waiting for you to make your move. Wouldn't you like to see the gold with your own eyes as you feel it in your hands?

Then again, maybe there's another choice, and perhaps it's as simple as a few typed words. If a horoscope or a fortune cookie could offer us a future, then should we take it? Should we thrust ourselves into its meaning and its possibility, or should we just pass it off as a quirky way to celebrate the end of an Asian dining experience?

Not to sound like Eminem, but "if you had one chance," would you pursue the words that you received in a message that came at the end of a choice that was divided out at the table after one that was divided out to the table after one that was divided out to the restaurant. Of course, someone wrote these random missives in the first place, and a company printed them out. Nevertheless, this arrangement of random words was meant for you or is it all just gibberish that means nothing? You'll never know unless you flow into it to find out for sure.

Do you have the courage to take a chance?

What do you have to lose?

Is it courage or false hope? Are my words the truth or lies? Am I here to send you to your doom and gloom? After all, to be tempted with prophecies of the future is evil, but what if this is part of a mission from God?

In the end, who knows what the truth is? There is no one-size answer, but there is the feeling of being compelled to jump or to halt. To go the wrong way is to ignore the fail safe, but to ignore the opportunity is to squander your chance.

Do what you will in accordance of what you know of the universe's great truth, but be aware that some of these are subtle calls. They're not always a priest in a car or moment of clarity in the Toiyabe Mountains.  Then again, sometimes, they are.