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.

A Couple Weeks in the Life - The Things We Do When We Drift Away

1. I've been compensating a lot lately. I find myself leaning on the car door to get out of the car, and I tend to feel like I need a wider berth while walking through crowds. This was a big issue at the West Reading Arts on the Avenue shindig. Here, I find time in fine china shops and big crowds to be things I want to limit my time in. I don't want to avoid things altogether, but I do feel more rigidity in my left leg (hence a need to talk in wide open places more). At points, it feels like I'm wielding a cement boot on my left foot. Add to this dystonia cramps in my toes (they get stuck in their own claw position), and you get a recipe for procession to the next level.

And speaking of toes, why is it that it's 90-100° outside and I need a blanket over my cold feet?!!

Additionally, I find my hands and arms occasionally snapping, right before bed, in the dyskinesia punch drunk ballet. Let's just say that this isn't too fun.

This is a perfect time to plug hyperhidrosis' evil ways. If you're a Parkie, that sweat has a name, and it's dangerous. Drink lots of water, stay in the A.C., and avoid the heat. Your health is paramount. If you have to be outside, seek shade and limit your time in the heat. Sunscreen is your friend.

This is also a time to go on the Lyme disease / avoid ticks warpath. Lyme does a lot of things to the body that PD does. That's why it's called the Great Imitator.

2. Simply put, you may just want to go to Primanti Brothers' (A Pittsburgh area thing, pushing east) and have a huge pretzel with lots of garlic sauce as an appetizer before their unique burgers (fries and cole slaw + meat on Ptalian bread slices).

3. If you have no Primanti Brothers, just go play with the puppies at the mall. You both need the opportunity for mellow times.

4. It's always a good season for the flowers, though you better look quickly because they tend to dry up fast in the excessive heat of this time of year.

5. Just remember, no matter what befalls you in life, you're a good person. People may not always get what is going on in your life, so this, to me, is why it's important to talk about it. I wrote about that HERE for www.parkinsonsdisease.net , which features a lot of good writers. Check them out, and keep wishing fellow Parkie Allison "Perky Parkie" Smith a speedy recovery, which you can read about on her blog.

6. A few weeks ago, I got to see my cousin David and his daughter Alexis for the first time in forever. A few nights later, I finally got to meet up with my friend Pete (from Texas) to meet his wife Elsa and her daughter. It felt great to catch up with everyone, but sadly, there's never enough time to do all that we need to. Here's to next time, all!

If this were just family and friend get togethers, then this would be inconsequential, but just like the 72nd birthday family get together we had for my aunt last Saturday at the Cracker Barrel, there's something about feeling the love and support of family and friends (from both directions).

There's also something to be said for people who support us in our efforts to be more. For this, it's great to include all of them on Team Parkinson's Dan (as well as my appearance on Team David and Team Pete).

If you'd like to do your part to be a part of Team Dan, please consider GOOGLE +1 ing me, following this blog, or liking my Facebook page. Likes and follows might not seem like a big thing until a movie decides to cast Taylor Swift or Selena Gomez, but interest plugs a website, too. Additionally, my Facebook page is the way a lot of my posts get sent out when they're not directly Parkinson's related or too philosophical / theological. Obviously, I don't post everything on every page, but I do try to express me in a lot of different ways.

8. In the past two weeks, the following posts went out:

THE 2 YEAR ANNIVERSARY OF MY FIRST PARANORMAL BOOK RELEASE - COMPLETE WITH FREE BOOKS. There will be an additional date for Eureka in Flames when my revisions get squared away.

RETURN FROM  ENGLAND / BURY ST. EDMUND'S DAY - LIGHTHOUSE DREAMS WITH LOTS OF BRITISH PHOTOS. I was writing this for a lighthouse magazine, but I didn't think it would go anywhere... until I got 2300 hits in 23 hours. The main thought... don't think. Apparently, people really like it. Who knew.

FAITH / BELIEF / SPIRITUAL THOUGHTS BASED ON AN ESSAY I WROTE.

30 THINGS I BELIEVE.

I don't claim to be an expert on theology, but here's my take based on my experiences.

INDEPENDENCE DAY - 60 YEARS SINCE MY GRANDPA MANNY DIED AND THE MOVIE INDEPENDENCE DAY. This features a really funny list of my takeaways 22 years after the movie was released.

GETTING OBITUARIES RIGHT AND WRONG - RESPECTING THE DEAD. Yeah, some people get it right. Other people sell how a person with Parkinson's choked on a piece of steak while not mentioning aspiration pneumonia and swallowing issues. It's all just cheap clickbait.

THE CLIP SHOW - MY GREATEST HITS. A good starter page to spread the word.

FINDING A MODERATE VOICE IN AN INSANE POLITICAL GLADIATOR BRAWL. Kicking politicians out of restaurants sounds cool until we see the tit for tat hatred both sides play. Calmer heads. Rational discourse. Please.

9. Things are getting more and more right with the new Yaris in that it's looking like my Yaris. Hence, the reappearance of the "I love my wife" sticker.

10. If you're a fan of waterfalls, and I am, please check out this FACEBOOK PAGE. There's a lot of great New York Falls. Many can be found at Ithaca, Letchworth, and Watkins Glen. You can find them all here. Gracias for the sticker Ed!

11. The night herons of Ephrata are still alive and well!

12. Sandals Jamaica... the meaning of life is a mix of beautiful scenery, romantic togetherness, incredible weather, no kids, all-inclusive luxuries. Everyone deserves them at least once. I'm just saying. Granted, life doesn't always work out that way, but if you can, you should. I can't imagine being able to stay for a week in an above the water hut, but we can always dream. I'm dreaming.

Have a great one everyone! Thanks for reading my thoughts and story!

Gotta love Toyota!

In spring of 2007, I chose to go to Toyota in order to buy a new car to replace my gas guzzling Chevy S-10. This ended up being a Yaris, a choice I made for its gas mileage and sporty blue color.


Today, the car saw a sad end, when it "died" in a car crash. In the crash, I was hit on the driver's side. Fortunately, my car took the brunt of the damage, and I was safe. Unfortunately, I bid goodbye to my driving companion of 11 years.

Together, my wife, and I have traveled from Pennsylvania to Ohio, Michigan, Maine, New York, New England, Virginia, Georgia, and many different spots in a car I affectionately tagged "The Macho Dude." After all, that was what Yaris translated to.

My car was there for many important moments. I used it to go on honeymoon with my wife, travel to hikes, haul rocks, get through snow, get to work, and travel extremely rough back roads. It never failed me.

Even when my tires were slashed and it needed parts fixed, it came back resilient every time. My auto repair guy told me that it owed me nothing, but I saw my car and its 250,000 miles good for another 50,000.

Today, it fell prey to a driving error, but it "died" keeping me safe. 

I write this to you as a diehard Yaris owner. Normally, we think of that term for cars like Jeeps, VW Bugs, or expensive cars and trucks. For me, I look forward to replacing the "Macho Dude" with his "son," another Toyota Yaris.

I thank you for making an excellent automobile that more than exceeded my expectations.

ME

TOYOTA'S RESPONSE:

Thank you for contacting Toyota Motor Sales, U.S.A., Inc.

We are sorry to learn your 2007 Toyota Yaris was totaled in a car crash.

We are very pleased to hear how well your 2007 Toyota Yaris performed in the accident.

Toyota is confident its vehicles are among the safest on the road today and is committed to the highest levels of vehicle safety and quality.  All Toyota vehicles are engineered with safety in mind. Every vehicle manufactured by Toyota meets or exceeds all federal safety standards at the time of production.  While passive collision protection is very important, Toyota also provides an array of active, passive, pre-collision and collision avoidance features. The “Star Safety System” is now standard equipment on all Toyota  models.

We understand how valuable your time is and truly appreciate the time you have taken to contact us.  We have mailed you a gift as a token of our appreciation for your confidence in our vehicles.

Your email has been documented at our National Headquarters under case #1804230372.  If we can be of further assistance, please feel free to contact us.

Sincerely,

Courtney W.

Toyota Customer Experience Center

TOYOTA'S BOX IN THE MAIL

MUCH APPRECIATION FROM ONE HAPPY TOYOTA CUSTOMER IN EPHRATA, PENNSYLVANIA (IN HIS NEW TO HIM 2016 YARIS, WHICH HE WILL NOT BE HAULING ROCKS IN!)!