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

Think / Able - and Check out My Parkinson's Facebook Page
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Tuesday, July 31, 2018

30 Parkinson's Mental Health Concerns / Developed Conditions

            Recently a friend of mine who works with a mental health group encouraged me to speak for said group’s clients and the community about their mission. I thought about this for about 2 seconds, and then I agreed. In the future, I will be doing this in order to get people to think about how Parkinson’s affects people with Parkinson's mental health (I can't speak for other conditions since I don't have them).

            Now that I’m sitting with my thoughts, I’m trying to think about how I want to express things. Normally, when we think of mental health, I immediately come to the word depression, so obviously, there are concerns many Parkies feel with issues of serotonin and dopamine levels.

            And while the biological reasoning for our problem is expressed in many places, there are other things that Mr. PD creates:

1.      Stress – I’ll let Holmes and Rahe handle this one for you, but I will say stress can do a number on anything and everything. Thus, the key is to find your happy place quickly. Accept loss forever. Create opportunity in tragedy. Easy enough, right? OK, yeah right, but really, that is the end goal we should be looking for. The question is how to get there. Interestingly enough with Holmes and Rahe, a jail term comes in fourth (in terms of severity) behind divorce and separation. Obviously, people must have access to Kevin Hart telling them how to “get hard.” Number one is death of a loved one. Contracting an illness is #6, which is just ahead of marriage. Personally, I would think that most men could lower the stress of marriage for themselves and their future wives if they deferred decision making unless it really needs their approval (in my case, I pushed for a botanical garden over a stately mansion, but that was more in how I knew my wife loved flowers and how a foot or so of snow when we were previewing it wasn’t a fair judge of an August wedding / my wife deferred to me on the music choices, and I was OK with all other choices).

2.      Fear vs. Paranoia – we can have healthy fears of things, but they can also develop into full-blown phobias. Keep in mind, the more it’s mixed with anxiety, the more it becomes “irrational,” even when we know we’re being “suckered” by it. And trust me; it takes a person who has been suckered and still knows he’s being suckered to say this.
3.      Anxiety – fear, panic, worry, and unease. It’s a well-known fact Parkinson’s causes none of these things (sorry, Opposites Day).
4.      Neurotic state – long term condition of feeling down, guilty, anxious, shy, self-conscious, or envious.
5.      Trauma – a serious disturbance that we feel after something happened. For instance, a little girl is bit by a dog, so she might relive it or feel paranoid around dogs. What things might cause us to relive bad feelings and create disturbances to our sense of being after PD does its number on us?

6.      Hallucinations – wide awake visions that aren’t there. These fall under psychotic disorders since they are a break from reality. Dopamine fluctuations and medicines may cause these.
7.      Surreal dreams / Nightmares / REM sleep disorder – what’s a good night of sleep to a Parkie? Either our meds keep us awake until the wee hours, we don’t wake up refreshed, or we have weird dreams that we may act out. While the dreams would be something to TIVO, the issue here is that we have them constantly, and they create separate beds because we don’t have off switches; thus, we can be “physical.”
8.      Co-morbid diagnoses – there’s a whole lot of these “free toasters” that we get for playing. Every time we add one, we get a new opportunity to feel “blah.” Mine include dystonia, sleep apnea, and hyperhidrosis. I also had dyskinesia on one med, and the doctors also found a nice case of Lyme disease, which won be a spinal tap.

9.      Hopelessness – There’s no cure so people collapse into sadness. This can become “absurdity” when we wonder, “Why push the boulder up the hill if it’s only going to roll back down each and every time?” Here, we might find ourselves blaming ourselves / others / God instead of coming to grips with how things are what they are. There’s nobody to blame, and besides, there’s no check we’ll get to compensate for our pain. At its worst, this leads to suicidal ideations. There is no best except getting past it.
10.  While we are coming to grips with loss, we go through the obvious sadness. We also go through denial, anger, and guilt. How do we ever make peace with this and accept our place in life? This is individual to everyone.
11.  Lack of independence – Everything from becoming the passenger to having a designated butt wiper falls in this category. Sounds like fun, hmm?

12.  Losing people / driving people away before they leave – On one hand, we have those people that can’t handle the burdens of our condition, so they leave. On the other hand, other Parkies will go out of the way to get rid of people so that they can be in control of burning the whole house to the ground. It’s not easy to watch Parkinson’s, and it’s not easy to watch loved ones watch Parkinson’s. Here, I like to say that nobody has a monopoly on who has it the worst. Stick together. Love is a good thing.
13.  Parkinson’s Emotional overload – In my case, computer voices on telephones / self-checkout lines / intense traffic with volume, lights, and sounds / screeching noises / intense agitations of others. This generally comes with a disclaimer, though it also proceeds through discussions / needs / quiet places. Recently, I added people swirling ice around in glass cups and any noise directly in my right ear. Some sounds are just too much. When they hit, it makes me want to explode (in screams and vomiting), so it’s easier to close myself off when I know that I can control myself.
14.  Perceived mood or tone – I’m smiling, but since I’m not smiling, you probably don’t think I’m happy. Cue Louis Armstrong so that I can smile as big as possible so you don’t think my voice and facial expressions dislike you. Oh, and let’s not forget how bradykinesia, which causes this, also keeps us from blinking.

15.  How the heck do I explain all of this to young family members?
16.  The Be All, End All med didn’t work. Now, we need to get off the medication AND get readjusted to the new one. There goes a month or so, while symptoms exacerbate. In the meantime, we get to think about things like I did when I confronted past / future traumas of cognitive issues / dementia / passing out in the middle of a conversation
17.  False diagnoses – PD can’t be confirmed until death. Sometimes, like with Robin Williams, it’s Lewy Body Dementia (same ballpark, different team). Sometimes, we were diagnosed as X, when it’s really PD. Since we need our brains, we’ll just have to hope our diagnosis is enough and the meds work.
18.  Avalanche Day – the day we find out what we have in the form of “we just need to confirm this, but we’re about 100% sure.”

19.  The day of confirmation – this could be another avalanche day, but the reality is that we’ve crossed this bridge with the MRI, bloodwork, and physical testing.
20.  Randall “Tex” Cobb Blues – We’re revved up to fight the champ, and we come in tough, but instead of winning, we take 15 rounds of a beating to lose the fight. This is how it feels when we lose the fight and take the step back.
21.  Apollo 13 Blues – Every time we lose the moon, we have to get ourselves set to get back to solid ground. Along the way, we get PO-ed at the world, and we find venting our maladies is the only option. I like to say how all those things that once seemed so important are things we learn to lose and trade for other good things / life. Yeah, what’s really important and how do we adjust when the time comes to confront what we can’t do?

22.  The JK Rowling Blues – When we write / express our thoughts, but nobody is out there listening to us, so it feels like we’re just waiting for that big opportunity where someone else says that, “X is worth reading / listening to.” When that happens, we get to share our story. Until then, we’re just hoping to make contact. In the meantime, it just feels like a lot of rejection letters.
23.  The Jenny McCarthy Blues – we have bad luck with traditional meds, so we blame some BIG entity and assert conspiracy while backing hucksters with “natural” remedies. There’s lots of people out there selling non-scientific stuff. This is not to say that all natural remedies are bad, but if it sounds too good to be true, and it’s not being backed by doctors and researchers… yeah. You can learn more about vitamin standards through the discussions at the FDA. Here is another good link on that.
24.  Frankl / Stockdale Reality Therapy - In many ways, you can put anyone talking about a cure being out by Christmas as people promoting false hope. This is named for two writers who didn’t give in to that magical thinking, so they focused instead on being grounded for the long haul.

25.  The High Times Blues – when people with no understanding of CBD recommend medical marijuana to someone who has Parkinson’s. Mind you, this has nothing to do with medicinal properties, but instead is a backdoor opportunity to legalize marijuana so that they can get stoned in a room with a big hemp leaf poster in it. This comes with a standardized argument sheet from THAT SAID, in my time with Parkinson’s, I would be more apt to try this than before (as based on problems my body has with other meds).
26.  The X-Files Blues – we come to see some great truth of Parkinson’s / its treatment, and we can’t seem to shake what it means to the world. This isn’t all good or bad, but it does create an extreme sense of focus on what staying the same path will do to us and them in a negative kind of way. For me, this happened most recently when I encountered issues with dopamine agonists, and I found a lot of professional information about the horrific symptoms they MIGHT cause. This is big and scary, and people do need to know. That said, how do we say it when A) it isn’t written in stone and B) it can appear completely out of left field, but C) it may not happen?

27.  The Internet Research in Parkinson’s Quasi Doctorate – when our life becomes so well-versed from reading way too much Parkinson’s information despite never having successfully completed an Anatomy and Physiology Class. Symptoms include the ability to use phrases like “Unified Parkinson’s Disease Rating Scale” and “MAO-B inhibitors” in conversation so many times that our knowledge becomes contagious to others who talk with us. I'm about ready to finish my sophomore year.
28.  Medshelf expansion plans – The longer we go with our condition, the more medications that we end up needing / switching out.

29.  The doctor becomes my doctor the longer we go in our condition.
30.  Watching loved ones suffer.

Add your thought here.

More Chichen Itza (Mexico) pictures here.

Wednesday, July 25, 2018

25 Things the Old Non-Parkinson's Dan Would Do....

Yesterday, I was spending a lot of time thinking about the things that I would say when I speak about Parkinson's related mental health issues in the fall. Simply put, thinking about all of the bad things we Parkies face is a downer, so rather than post that 1 first, I thought I would make a list of all the things I do / did when I'm not having the smack laid down on me by PD.

Mind you, your list might look different than mine, but that's OK. The point is not to think about all of that other junk and focus on life... the good, the must do, atoning for the past, and making something out of the future. Thus, I'm challenging you to ask yourself, "If you could throw Parkinson's in a dumpster after you beat it into submission WWE style, forget you ever had it, but still keep the insights from it, what would you do today?"

In no particular order.

1. I'd think about how, with all this rain, this weekend would be a good time to go and see some waterfalls in the Poconos. Dingman's and Silverthread Falls are accessible on flat boardwalks (wheelchair accessible) with no steps if you're in the northeastern PA area and want to enjoy them.

2. Write my supernatural stories! This reminds me that I also need to get myself registered to sell at Paracon! Time to share my fictional writing with the world.

3. He'd probably play video games, but this Dan is on hiatus from that time waster (since this morning) I have some other stuff to write and goals to accomplish. I can't do that with Charm King going.

4. He would contemplate what class to register for in the fall since he gets one for. Such are the perks of free classes as a job benefit.

5. He'd pose in a goofy fashion for pictures!

6. He'd look to the stars. Even with a cowlick and a t-shirt on under his shirt, he'd have some clue that the world could be his oyster, if he grabbed the bull by the horns!

7. He'd get with the program and send those writing samples to his aunt Toot, who took him on his first plane and limo ride to New York City, way back when. Definitely a yellow and black list of accomplishments accomplishment he needs to make.

8. Like Alfred E. Neuman, he'd say, "What me worry?!"

9. He'd crank some tunes, and sing along with them as he opened the window for all of the world to hear them. Today, I'd be going with this since I was listening to Bowie on the way to work.

10. He'd realize that some days are like this, but tomorrow can be a better day if he wants it to be.

11. He'd be hitting the verticals in training for McAfee Knob.

12. He'd have better fashion sense than blue sneakers and brown pants! Fortunately, Heather is here to help with that now.

13. I still wouldn't be down with Peanuts / Snoopy like my Cub Scout companions were... even if The Great Pumpkin can be compared to Godot.

14. I'd get myself between some trees like a Boy Scout should!

15. I'd find some time to spend with my 4.5 year old nephew Dylan. There's some good reptile stuff coming up in town.

16. I'd get loose as a Christmas goose. First grade and PD rigidity is a drag. I might even try to learn how to break dance (not!)!

17. I'd go and eat a V+S Cheese steak. Actually, I did do that today!

18. I'd finish When Bad Things Happen to Good People, which is more useful for helping myself and others than playing more Gummy Drop.

19. Check in on who's leading Major League Baseball in strikeouts today. The current answer is Aaron Judge, but Joey Gallo, Yoan Moncada, and Giancarlo Stanton are all within 3 whiffs of one another. I'm as big of a fan of homers as the next guy, but put the ball in play people. What would Yogi Berra and Joe DiMaggio say?

20. I'd sleep in if at all possible! Wait! I already did that today, too!

21. I'd get creative and encourage creativity in others as well.

22. I'd remember to definitely call my family!

23. I'd find time to make goofy faces to disrupt otherwise serious photos.

24. I'd keep working on writing down that family history / scanning old pictures.

25. I'd keep up to date with scanning and uploading the new photos, too.

BONUS - I'd remember what family means more often... especially the family in my home. Granted, my wife Heather knows how much I appreciate and love her, but I'd still find more time to do things for her.

Friday, July 20, 2018

Not Taking a Walk on the "Wild Side" Anymore with 8/11/2018 update

In 2002, author Neil Strauss got the members of Motley Crue together to discuss sex, drugs, violence, rebellion, angst, heavy drinking, and music. What came out was The Dirt: Confessions of the World’s Most Notorious Rock Band. If anything, they were holding back as to how depraved that they were. Nevertheless, that first album was a classic. As for the book, if you’re into that sort of thing, it was really good other than anything connected to Tommy Lee and Pamela Anderson. His poetry about her was especially bad.

In the Crue’s later days, they reached a level of fame that couldn’t compete with their album length output. One of those songs that did have a level of success was “Wild Side,” and it sums up a lot of problems that pretty much go back to a lot of terrible life choices (Motley’s and the world that they viewed many of their fans as living in). However, they are entertaining to read about until you realize these situations actually happened (it’s like Led Zeppelin’s Hammer of the Gods turned up to 11).

As for “Wild Side,” I find that to be an apt name for a dopamine agonoist that I was taking until today. Since the medication may work for you, I choose not to keep people away from it, who might otherwise benefit from it. That said, I do believe all medications (pharmaceutical or natural) are a value choice. You need to be informed about anything from cough drops to morphine. Really.

Wild Side has a lot of warnings. These include a lot of symptoms such as the super extreme compulsion behaviors like gambling and sex addiction. I’ll list a few of the other ones here: Confusion, lightheadedness when someone stands up too quickly, nausea, hallucinations, sleepiness, weird body movements, worsening of parkinsonism, abdominal pain, bloating, blood in the urine, blurred vision, chest pain, chills, nervousness, blood pressure changes, cognitive issues, depression, rapid weight gain, tightness in chest, troubled breathing, loss of bladder control, trouble with swallowing, sweating, nightmares, and unusual urges. And yes, there’s belching and gas, too.
My deal breaker issue with my medication was how it put me to sleep, mid-sentence, last night. One second, I was going over SAT vocabulary with a girl. The next thing I know, I was realizing that I was out for the count. I’m not sure how long, but long enough to know it, but short enough that I woke up on my own.

In that instant, Wild Side scared the tar out of me. Granted, I had some things on that side effects list, but other than feelings of “side movement” in an otherwise empty house, it was nothing I couldn’t deal with because I knew it was my mind playing tricks on me (though having weird dreams like being back in the Holocaust were starting to get all too weird).

However, the nausea and lightheadedness sucked. So does my nonsensical sleeping routine, so now that the worst has happened (added to a list of past and present issues from PD and meds that include cognitive issues, aspiration pneumonia, giving up independence + livelihood, REM sleep behavior disorder, needing a caretaker for bodily functions, and anything related to personal relationships), I'm done with it. 
So today, I kicked the (chosen derogatory term here) to the curb. I’m going to take a break from medications other than Azilect for a while. I haven’t had much luck with Parkinson’s meds other than that one, so I’m going to need to figure out potential job options (as PD gets worse, which I fear it is) and future disability status with the Office of Vocational Rehab (hopefully in the next week or so) and my doctor (I go back to  him in early September).
I’m glad Wild Side is no more. I just want it to take its stuff out of my body quickly, or I’m going to start charging rent.

8/11 post note - I didn't have any issues with withdrawal, though my experience is my own.

PLEASE PLEASE PLEASE do not use me as a doctor when I am only a patient describing experiences. For medicinal choices and effects, see a certified physician.

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