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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!

Sunday, April 29, 2018

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!)!



Friday, April 27, 2018

I Think You and the Moon and Neptune Got it Right (with a Little bit of Tremors, Echosmith's "Bright," and the Images of New York)


One of the best trips that my wife and I ever went on was a weekend vacation to Letchworth State Park in New York State. 

For those people that don’t know the difference between the state and the city, the answer is simple, and it’s defined in 2 pictures (the state above and the city below). 


While Jay-Z sings "Empire State of Mind" to represent the New York attitude, it's more about the city, which Frank Sinatra says, "never sleeps." Ace Frehley has his groove, Billy Joel has a state of mind, and Taylor Swift bids you a welcome to the city, but none of them really get the feel of the mountains, the waterfalls, the Finger Lakes, or the surrounding wine country. 

In your own mind, you can choose what you feel is better, and you can enjoy that. While I prefer the surroundings to the city, there is architecture, the arts, hustle, bustle, shopping, restaurants, and a culture unique and to itself in the city. You can't get that anywhere else, at least like this.













There is nothing wrong with these things, but given the chance, I prefer the state as evidenced in these next 12 pictures (to balance the 12 above).




The 3 above are Ausable Canyon



Adirondacks


Cooperstown Baseball Hall of Fame



Ithaca


Hudson River above New York



Watkins Glen


Lake Seneca

Obviously, one of these things is not like the other.

At Letchworth, these are some of the images you can see of the 3 mega waterfalls on the Genesee River (also the name of a beer that would be served in cans to family friends when my parents would go camping). I won't try to explain. I'd fail miserably. All I'll say is I heard wonderful things about it, so we just had to go!













Our final stop on the first Saturday of our trip (Labor Day weekend) was to sit at a viewing spot and gaze back on a waterfall from about a mile away (as the sun descended and left us dark, save the lights on the waterfall). It was too far to take good pictures, but it was beautiful. We sat in the silence and enjoyed the stars. From there, we went to another parking area that was less crowded to watch the stars. Amazingly, we were in the midst of a meteor shower.

The first one that I saw was a brilliantly visible streak. I immediately wished for Heather's happiness.


After a while, we went back to our hotel and crashed that night, falling asleep in a happy slumber.

The next day was a beautiful day with some other waterfalls (Stony Brook) and the New York State Festival of Balloons.

In the picture of the waterfall, you see no people. That's because people aren't allowed on the waterfall. The park discourages this highly. We didn't know this, and many of my pictures show people jumping off a lower cliff for the waterfall. I don't show them so that I can encourage you to be a rule follower and to not get hurt at a pretty park.






Yes, at the balloon fest, we did go up for a trial flight in a balloon. It went up about 100 feet, and the view was beautiful, but I was petrified due to my fear of heights. Mind you, this was before I was diagnosed with Parkinson's (about a year earlier), and my tremors bolted into overdrive. The balloon captain noticed this as well and remarked about my fear.

Who knew I was learning a Parkinson's truth.

By that time, I had also learned anger, positive excitement, and fear multiplied my tremor response. Also, I was engaging in some of the first behavior of foot tremors as my left toes would shake like Taylor Swift's response to the liars and dirty, dirty cheats.

In the end, I was happy to be on the ground, but happier for going around my fears to get up above the ground. Some day, I hope I can get back to NY State and do the Letchworth balloon dream with her. Bucket list stuff, you know.

That night, after supper, we went back to the hotel relaxing before bed. I was reading the Mothman book to prepare for our next trip to West Virginia to see the Mothman Festival. Yes, we really did go to that, and yes, it was that awesome.



As we were in bed, my phone rang. I looked at the number, and though I didn't recognize it, I knew that it was near where my aunt Toot lived.

"Hello, is this Dan?"

"Yes, who's this?"

"So and so from the such and such raffle drawing. You won our grand prize!"

At this point, my jaw dropped and my tremors went into overdrive. My wife kept asking what was wrong, and all I could say was "nothing."

It turned out the birthday ticket from my aunt had come up YUGE (in the words of Donald Trump).

The amount of money isn't important. It wasn't enough to buy a new car, but it was enough to pay off my wife's surgery after her accident in the Las Vegas desert and some other things.

In this, my wish on a shooting star brought Heather her happiness.

It was the fitting culmination to a great weekend in a beautiful place.


Here, I think the takeaway is simple, as Echosmith sings in "Bright," a song we listened to that night as we reflected on our good fortune and the beauty of New York State (which Echosmith capture perfectly).

"Did you see that shooting star tonight? Were you dazzled by the same constellation? Did you and Jupiter conspire to get me? I think you and the moon and Neptune got it right, cause now I'm shining bright, so bright."

The universe provides answers at the most desperate of times. Sometimes, we wait for just one good thing to happen in the midst of a storm, but really, it's all those other things that we're doing when life isn't going right that reward us with the universe's failsafe to keep us from going under. Sometimes, we may miss it because we don't like what it is (it's not always our favorite option), but it leads us to the right place if we accept it. In looking at my life, I can see it many times.

For instance, today, after much debate, I decided to give up teaching for a different option (after 17.5 years in a classroom) that will be better suited for finance, family, Parkinson's, and stability, since I adjuncted for the last 14 years. That was my choice. This is my choice, too. It's still in education, but it's not teaching. I had to give up adjuncting to do this. I could still teach at a different school, but for now that part of my life is over. No fanfare, a little heavy heart, and the future is all I feel.

The other day, my beloved car was totaled. I walked away OK and so did the other guy. While my car was old, I loved it for all it did for the last 11 years. Sunday, it died keeping me safe, and while it might feel weird, I felt heartbroken, even as I bought a new to me Yaris. Today, insurance gave me a check for more than what I ever could believe it was worth.


I'm not saying any of this was a cosmic coincidence. There's no scientific study on wishing on shooting stars, divine intervention, or universal failsafes, but I would like to believe there's a plan in the world for all of us, and something that we don't understand sometimes intervenes in these things.

I'm not saying this will happen to you if you go to Letchworth. I do believe it happened to us.

All I'm saying about Letchworth is it's well worth the trip.

Nevertheless, if you give whatever you feel this power is a chance to happen and believe in the best, it will come to you wherever you are. 

For those of you with Parkinson's who read this, that might be your cure coming. I'm not betting on that for myself though, but I won't rule out what brilliant minds might be able to do.

Maybe we were meant to play a part in someone else's recovery, life, education, or love. I have no idea what either of us are in this great play that is running on the big stage.

All I know is to work through the bad, and when I can, to enjoy the good with my bestest bestest. Somewhere in the midst of that, great truths will be revealed.

Letchworth is a great place to do that, and Echosmith's "Bright" is a perfect anthem for it.