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Monday, May 7, 2018

13 Concepts I'm Learning about How to Deal with Things that Pile up and Threaten our Happiness (Parkinson's, Work, Personal, Medical Results)!!



As I've spoken about in many of my posts, since the last week of November, things have been accumulating on my "Pile It on List" of stress. It sometimes feels like we are breaking even as my wife and I will take a couple steps ahead, only to go back 1-3 steps with our health / life. Fortunately, we're great together, but sometimes life's stress takes it out of us. For me, I'm combatting that by operating on a written list of job tasks. It's really helping, and I win every time I color a line black or yellow.

This keeps me from being too stressed, though I'm not as orderly as I should be. That said, I'm working on it and keeping myself in that mode of us "Must do / will do." 

I recommend this for other Parkies and caregivers. Heck, I recommend this to everyone.



The point of life is to live it, but also to rewire ourselves for the what ifs. If we are taking care of someone else and not taking care of ourselves, both of us aren't in a good place since our energy tanks are low. As I said, the key is eliminate the faulty wiring and get ourselves ready for what's to come. We can do this many ways, but we need to prepare ourselves for the what ifs (relationships, job, family, cars breaking down, houses succumbing to the weather, sickness, disagreement, and other things that could happen day to day). These are the things everyone goes through,  but this person doesn't always know how to deal with them or feel like he or she can get out from underneath.

Here, if we're so inclined, we can think of Camus' take on Sisyphus, who was condemned to role a boulder up the hill only to have it go back every time. The central question was whether or not it was right to give in. Camus went with the idea of the absurdist hero, who stays true to his plight in the hope that someday he will be free.



As Albert Camus said, "I leave Sisyphus at the foot of the mountain! One always finds one's burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man's heart. One must imagine Sisyphus happy."

Let's look at this with a simple definition. Stress is what it sounds like: A pile of bricks pushing down on our chests like we're Giles Corey. Generally, we aren't like this historical figure screaming out for "more weight" as the Salem Witch Trials took his life, but some of us do dig our own pitfalls and compound our problems (I'm very experienced at this - but I'm learning to be better). Here, the best advice I can give is to learn from mistakes and not make them again. That said, we need not stay out of fray where things can go all or nothing, when they're much more likely to end poorly. Nevertheless, by giving it our all with the greatest help, simply by trying, at least we made an attempt. Whether it wins big or crashes to earth, at least we can celebrate ourselves for giving our all. 

Let's just go into it with enough advice and assistance. In doing this, by thinking about our time in the game, we can reflect on how we've at least tried when we think of all the people who won't, can't, and don't want to risk failure (I'm working on accepting life success in this way, too). What good is contemplating a game we're never going to play?

How can you give your best effort until you stepped in the ring?



Another point to this concept of keeping ourselves out of trouble is that we don't have to make every decision on the spot. Sometimes, we need to think about it first (I'm also an expert at not doing this enough) and phone a friend. By cutting out the need to do, we can meditate, pray, seek advice, and / or search for evidence. That's a good thing.

Some people may not be aware that there are tests to monitor the stress in people's lives. Perhaps, this is because they have never heard of stress reviews by name, but my belief is that we've all done something like the Holmes and Rahe Stress Scale in order to find out what's ailing us. Sometimes, this rewiring we're going it about knowing the rules of the game. Find a mentor, remove what doesn't need to be, find a support system, and project goodness out to the world. It may only give you a couple points back, but as you go, the things it teaches will become natural and instinctive.

Which brings us back to MWAH!



Nevertheless, I've been trying to work my way through all of these stress building experiences in a way that doesn't leave me feeling existential. As I said, I'm motivated to do things when they are written out on a list. Here, I feel like I'm working hard when I cross things off on my color coded to do list (pictured above). However, other times... not so much. Long live the Parkinson's exhaustion tendency that gets in the way... NOT!

In my mind, I know what I have to do (stay loose / stay positive), so I reflect on the simple things that make me happy OR things that I am thankful for.

We'll start with advice (#1) from my cousin David....


1) Never give up on yourself, no matter what happens.
2) Some things are priceless.
3) Whether it's writing, acting, or life, push it to the maximum. 
4) Never stop talking when you have a connection. You may not be an X, but perhaps, you were meant to be a Y.
5) Encourage others to the maximum

Moving on from that to the Parkinson's things that affect me. 

#2) My left side, which had been wracked from the car accident 2 weeks ago, is slowly getting better. As I've said before, I was able to get up and out of the car and move around, but it's really painful to lean against it now that the adrenaline and fear from that moment have vanished, so I need to keep pushing myself for walks of longer differences. Yosemite in about a week... I can't weight to see the waterfalls, bears, and rams!

3) I'm currently in the midst of my sleep apnea machine use, which is a tough process figuring out what works and doesn't. Whether a face mask or how to lay around to not feel hurt, I am conforming to the nature of going from have to do to want to do. 

For the most part, I can sleep well with it, when I can sleep (the past few nights are around 3-5 hours with a nap usually thrown in. Given about a month, I will be able to figure out how well that I'm doing with this new medical process. At that point, I will be going to MY pulmonary specialist for a check over

On that note, it seems weird to have a personal neurologist and a pulmonary specialist that I can all my own. At my regular doctor's office, I just get who is available at the time. However, with a regular doctor, he or she knows me, and it feels more personal.


4)That being said, the medicine cocktail I was on up until earlier today (my doc has me taking Benztropine / Cogentin to go with the Azilect / Rasagaline and Ropinerole / Requip),  has caused me to monitor a lot of what went on with it. For those reasons, I am now abandoning it on the basis that there are too many problems with it, so I will be on Sinemet.  That wasn't ideal, but seeing a spotty memory in my head... yeah. That's too much. 

From a professional standpoint, my doctor had wanted to hold that off as long as possible, but with this one not working, too (that's the 3rd medicine I was affected by), everything seems to point toward bumping up my need for Sinemet. 

5) As I said earlier, both my wife and I are monitoring the side effects of my medicine, as well as how they operate together. Looking up the side effects of what I'm taking is a learning process and a scary experience. While I can, I'm going to continue to learn everything and do things to enjoy life. Nevertheless, there is a lot of medical-ese in some of the academic things we need to accomplish, so every day is an adventure.

This list of side effects is from e-Medicine Health. There are only the ones on the list that apply to me. You can see more information about what might apply to you HERE.

On the list from them, I list the ones I am seeing and experiencing.
  • confusion and hallucinations
  • constipation
  • dry mouth that interferes with speech, swallowing, appetite, or eating;
  • blurred vision
  • twitching or uncontrollable movements of your eye lids
  • drowsiness, feeling nervous or excited;
  • nausea, upset stomach
6) The same can be said about my sleep apnea machine's side effects / problems with it. While not everyone feels inclined to wear a CPAP mask at bedtime; however, it's a working solution that can positively affect people with sleep apnea. Studies show is prevalent in people with PD (though some people develop snoring / breathing issues based on weight). Thus, these are the 3 biggest problems:
  • The mask is considered a nuisance (uncomfortable or creating claustrophobic feelings). 
  • Additionally, people may get a runny nose or nasal infections. 
  • Uncomfortable leaks, which keep people from getting enough air.

I would also add that if you're a twist and turner like myself, well, you will probably have to find the right way to sleep with the mask on, especially if you and your significant other are going to co-habitate in a queen or king sized bed. Considering that I'm now physically trying to touch / hit things in my sleep, I feel that I can do it under sleeping conditions in my own room without hurting my wife (when I have nothing but love for her).

7) In the past, I have spoken at length about how I generally like going into a dream world, but recently, my dreams are becoming more prone to wild arm movements. One example of this happened the other night, when I woke up the other night to feel trapped in the bedroom. I couldn't find the door or the light switch, and a feeling of anxiety came over me. Was I at the mercy of some ghost or demon that was going to suck the life out of me in a room where nobody would rescue me? That might sound funny to look at it that way, but that's not my intent. Instead, I state it to discuss a new level of PD effects with my life. 



 8) I have also spoken at length about my love of music, and how I feel that it can truly help us relax, let the dogs out, or go crazy to

I hadn't heard this next song in ages, but it came on the other day, and I just felt a sense of some extreme force for change. It's the same thing that exists in Neil Young's "Rockin in the Free World," Hendrix's "Voodoo Child," the Doors' "The End," MC5's "Kick out the Jams," Allman Brothers' "Whipping Post," and Joy Division's cover of the Velvet Underground's "Sister Ray." Sometimes, we just need raw, live energy like The Chambers' Brothers' "Time Has Come Today," which expresses how something needs to be said and done to make things better, even if it's just us facing down the PD demons.


9) Spending more time in my wife's garden, both to check out the flowers and to drain the ponds. Siesta Zone more often is a good thing. With that said, it's beginning to look a lot like spring!

9A) Since I'm giving mad love to my wife's creative side, here are some of her stained glass creations.

10) The new Avengers movie was great, and it's decent popcorn entertainment on the big screen. I recommend checking it out. Go to a matinee if necessary, it's worth it. If you need to, find a teenager to watch it with. That's what I did when I went with my one tutoring kid and his father. I'm sure said person will refer to the movie as exceptionally  "cool" since it works really well on that mindset. And yes, I will admit to feeling 14 in my appreciation of the movie.


11) Last Friday, Heather and I took my mom out to eat at Appleby's since my dad was away hunting and fishing. It was nice to have a bonding experience like that where we can get together and discuss life and love and the pursuit of happiness. The food was pretty good, too. 

Normally, we don't do the appetizers thing,  but sometimes, you just have to treat yourself to soft pretzels and all of their sauces. Our best tasting one was in a restaurant up in New Hampshire, where everything was top of the charts. Primanti Brothers do a good one as well, but their hot sauce is actually nuclear hot. Use sparingly. I'm living proof (beefcake, beefcake). 


If you're not familiar with Primanti Brothers, it's probably because they are a western Pennsylvania / eastern Ohio thing. Their claim to fame is sandwiches with fries and cole slaw on them. Cole slaw is too healthy for me, but fries on burgers... Yep, my wife used to go to a place in Cleveland that did that. And yes, we're hooked.

12) The best way to keep loose and lose the rigidity is to get moving. For me, this is hiking. The other day, I had to drive past a short cliff-side walk (about a mile back and forth, tops), and I was debating whether to do it or not, but as my mind tried to pull me away with its gibberish, I managed to say, "The heck with it." 

When I know I'm fighting capitulating to the concept of giving in, I need to do what I can to win since I know the only other option is to lose opportunities and time if I choose to be a huffa-lump on the couch. In this mindset, it's never easy, but then again, it never gets as easy as it does in the beginning days of having it. Thus, we must push through. When we do that, whether it's a walk back and forth on a city block or Jimmy Choi doing Ninja Warrior, we're giving it our best to keep ourselves moving forward. 


And remember, not everyone's idea of the best is the same. Thus, we need to all start back in the field somewhere. I think about this now as I feel the dystonia and cramping in my right foot, too. If I sit around and do nothing now, I will lose opportunities I can't make up later.

Thus, the bucket list.

This is something I would tell anyone who needs to / wants to push back at the rigidity. Yes, we all have to come to peace with this state on our own, so I won't mandate what others do, but I would really like to see more Parkies out in force, showing their smiles as they show that they are good lovable people who don't deserve to be thrown off of healthcare or treated like second class people. Just remember the historical evidence of Lieutenant Dan making peace with himself. 


Moving back to the hike to Chickee's Rock overlook on the Schuylkill River, I got to the top of the trail. Pausing to shoot pictures with my camera, I saw the May apples were coming out in force. When I looked closer, I saw that the little pea sized buds are forming. 

It may not have been baby owls, a flock of night herons, a huge elk, or a pair of baby black bears going down the pole. Instead, it represented something beautiful that my wife pointed out to me on a trip some years ago. 

Over the years, she's taught me a lot, and she's unwavering in her support. I hope I can continue to pay her back for all that she does for me, little by little.



On that note, I must say that no matter what we are up against, we always get through it. I couldn't think of a person who I'd rather have in my life as both my loving wife and the CEO of (what's left of) my brain!

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