730 Days in the Life: Holding Back the Change in Seasons from All Directions

When I think of the change of seasons from summer to fall, there are a lot of positive things that come to mind. I think about beautiful autumn colors, like the ones that were on display in October 2008 when my wife and I got engaged in the Poconos. The oranges and reds that year really stood out in a way that I haven’t seen much since then, though a few years ago we did get to wander around French Creek State Park to see some amazing fiery colors.

Pennsylvania / Pennsyltucky can be beautiful this time of year (as it’s getting now with its oranges and reds poking out). It's all about finding the time and energy to see it.

Here, Autumn also makes me think of colder mornings and shorter days. This October, it seemed like summer was hanging on well into October with a nearly 80° day before 2 days in the high fifties. We literally went from air conditioning to accommodate Parkinson’s sweat in a house that had maintained 78° of heat from the summer (with no heating kicked in) into the middle days of October. Talk about system shock!

Now, if you mix in darkness and rain, which for Pennsylvania looks to be more than 50% above average in my sleepy corner of the state, you have a perfect recipe for the seasonal blahs. Also known as seasonal affective disorder, this is a diagnosed condition as opposed to just something we call it, though a fair bit of people exhibit these signs and symptoms and have a pretty good idea what they are. The Mayo Clinic has a lot of good recommendations for dealing with this. I recommend it to anyone who might be feeling "seasonally blah."

That said, depression and blahs do get worse during the colder, darker months. For me, the first of November is always Melville’s “November of the soul.” I wish I could say I see it as Día de los Muertos (Day of the Dead, which it is), but alas…. I’m not quite there, though my feelings on the Mexican customs of remembering the dead most definitely are.

Unfortunately, I associate this time of year with the long descent into winter. Other than turning back the clock for an extra hour of sleep, I don’t ever feel happy about losing an hour of daylight after work or waking up to colder temperatures. 

With my Parkinson’s engine running hot, the sweater that feels nice outside often feels way too warm inside, so I’m in that perpetual off state of discomfort. Fortunately, most days are still about right in temperature, so I can plan accordingly. Also, it’s kind of nice that the trees are still holding most of their leaves (though the wind is blowing a few in front of the window as I sit here typing) so that skeletal branches won’t be the aesthetic du jour along the highways and bi-ways any longer than they are going to be.

Perhaps more than anything, November 1^st has come to be the day I began taking rasagiline (Azilect) in 2016. At my initial 90% sure it’s Parkinson’s appointment on September 27, 2016, I elected not to go with medications until it was a certainty that I had Parkinson’s. Two years ago, the doctor’s prediction came true.

That day was a very windy, overcast, and ugly day. My wife and I were supposed to be going to go for a walk on the Appalachian Trail after the "confirmation" doctor visit, but it was just too ugly and we were just too drained, so we went out to eat instead at a diner and picked up my medication. When we came home, I began the process that I’ve done well over 700 times since: I took my "take out the faulty particles" medicine to give my brain's natural dopamine a fighting chance. Two years and several other Parkinson's medicine days later, I’m working through a medical routine and more complicated symptoms to try to be me as long as I can keep the Invasion of the Body Snatchers at Bay. The fact that the outdoor environment doesn’t help with this makes things more challenging.

I also started this blog on what would be my first official Parkinson's day (though in reality I had Parkinson's symptoms since 2011)... 157,550 visits and 182 posts ago.

With many of us who have Parkinson’s, our “happy brain chemicals” (AKA dopamine and serotonin, as well as others) are already out of balance. With fluctuating levels of dopamine to begin with, we can find ourselves in quite a dilemma as we find it harder to want to get motivated for anything, much less to go outside and get some between the trees therapy (or even fresh air). Cabin fever gets more common as the year drags on into cold days. I’ve already written about winter precautions, but I write this “State of the Union Address” with regard to autumn changes (particularly this autumn). 

For this, we need to make ourselves stay active and remember to do the things that we enjoy. We need to find things to want to do and to look forward to. We need our team to be there for us to motivate us to stay loose and positive. In this, the cold wind can freeze us out quickly if we don’t monitor our situation.

Here, I realized that I hadn’t been myself in a long time. I was starting to lose sense of me. Little things like organizing playlists for my mp3 player were getting forgotten about. The worry of the future was coming down hard on me. I could really feel it like I hadn’t since all of this Parkinson’s talk began 2 autumns ago. I had survived diagnosis, Lyme disease, 2 hospital stints, a car accident, worsening symptoms, sleep apnea issues, and the decision to not teach, and all of a sudden, I was waylaid by a seemingly impossible and un-nerving Neurological Baseline Exam and all of life’s events that happened at the same time. Compounded by Parkinson’s emotional "joys," I just stopped being me.

Then something happened out of nowhere, which is a new job in an advising position that I start November 1^st. Some of you may not believe in divine intervention, but I do. It literally felt like being pardoned from death row. I was Dostoevsky after having his sentence overturned. Because of this, I felt alive again, but numb. It’s been hard to write during this time, hence my general absence from blogging, but now, I feel like I’m going to be getting back to being me and the excitement of making educational knowledge possible to incoming and active community college students.

I also decided to get back to me and to create a 500-song playlist that my wife and I could listen to in our journeys. In keeping it with what my wife generally listens to on the radio, I set the bar between late 1970s and now, roughly 40 years, where the main requirement is adult radio friendly, though I did make a few exceptions based on our age and having moved through the period that is 1989-1994. If you’re interested, it’s very 80s and 90s heavy, though it does feature all years.

Songs 1-200 of the Rawkin’Rock / Pop Compilation

Songs 201-350 of the Rawkin’ Rock / Pop Compilation (to be linked)

Songs 351-500 of the Rawkin’ Rock / Pop Compilation (to be linked)

For the reason of enjoying a celebration of sorts and to see my 2^nd family of sorts, it was definitely time to have a do something fun getaway.

And so last weekend, my wife and I went to New York City to see friends that I’ve known from Air Force days (about 25 years). Friday after work, we drove into northern New Jersey braving the Nor’easter that was coming to get close enough to the city that we wouldn’t have to wake up at 6AM to do the drive to Jersey City to take the PATH trains (under the Hudson to the World Trade Center subway station) so that we could get uptown to the Museum of Modern Art (MOMA).

My wife is a big art person, and I appreciate art when it looks like something. A lot of modern art doesn’t really look like something or it just feels like someone is trying to get one over on someone. I know we’re all entitled to our own opinion. Thus, my opinion of art is that “if I can do it, it’s not art.” If it’s a huge canvas with a few horizontal or vertical lines of a different color on a monotone shading, it’s not art. If it looks like someone dumped multiple tubes of paint on a canvas and smeared them around, it’s not art. Call me traditional, but I’d rather look at the 10 millionth piece of art featuring royalty or religion, if the artist put some effort forth, than look at stuff by Andy Warhol. But that’s just me.

Getting to 53^rd Street to see the museum involves hustling across the train / subway station. For those people with Parkinson’s, it’s an obstacle course of people stopping, hustling, and bustling all around them. I could see how the noise, lights, and commotion of people could be a major impediment for many people, as I was really feeling it. As we walked to the newly-rebuilt passageway, things escalated “just” a bit as sirens went off and a voice on the overhead demanded everyone's attention and told about how police were investigating a threat and to stay tuned for additional updates.

Let’s just say that didn’t do wonders for my equilibrium. With the state of all things in the world right now and for the past 2 decades, being in a New York subway, especially under the World Trade Center, and hearing warnings is a catalyst for an overwhelming sense of fear and panic. Looking all around the facility, which is huge, thinking something or someone nefarious could be anywhere, left me feeling emotionally drained. 

In many ways in our society, people become numb to the news. When a series of pipe bombs in the mail gets passed off quickly in conspiracy theories as a “distraction” or a “false flag” and people stop thinking about the real human cost, it feels like we’ve lost something of our humanity, especially when they brush off the apology when they were wrong.

When I was younger (19), I can remember traveling to London a lot for concerts and music purchasing (before Amazon). I didn’t think anything about going alone. I can remember one time when there was an IRA bomb warning in the London tubes. The person on the radio just said, “We won’t be stopping at X,Y, and Z” like it was nothing. I remember that it happened, but I don’t remember being scared by it, just "affected." Now, it feels like we need to be scared, especially since 11 Jewish synagogue visitors were killed later last Saturday afternoon in an anti-Semitic rage. 

Thinking about how I found out, my cousin posting on social media that she was “safe” since she and some of my family live in Squirrel Hill (Pittsburgh suburb where it happened), it seems odd to think that this is how we have to hear and learn about people’s predicaments and whether they’re OK. Yet for many of us, this is how we get our news. When the U.S. Navy Seals got Bin Laden, this is how we heard about it. Baby pictures, engagements, marriages, moves, and all sorts of happy news is out there, too. It's how we communicate.

And so are the crazies, it seems, hiding under the banner of free speech as they incite their hate for anyone who isn’t like them in their depraved chat rooms. And sadly, the effects of this hurt everyone, not just their intended victims. These people come in all colors, shapes, sizes, and political leanings. With an election and so many issues on the line for so many people, the stakes are raised. Civility is out the window. The knee jerk reaction of the aftermath always comes back to “what will I personally lose because this person went off the rails?” This has nothing to do with the loss of a human being or shreds of humanity, but who is coming after mine. It’s really exhausting to feel like every day is the lead-up to a WWE wrestling match with someone coming in the ring and calling someone out for something in the most hate-filled and divisive ways possible. For instance, when Gab, the platform for many of these hate-filled attacks (and the one for the Pittsburgh shooter), starts crying about its loss of freedom of speech when Internet Service Providers jettison them from their service providers, it’s just really pathetic.

I mean, can’t we all just get along or live and let live?

In New Jersey, it’s really bad now on television with the attack ads on Bob Menendez, who has been accused of paying for child prostitutes in the Dominican Republic on top of corruption charges he was legally hammered with (a really solid reason to not let him run again, though he did anyway). 

For the extreme of that election ad, it should be said that watching any of these commercials and thinking that they steer people in a direction is something I’ve escaped by not having cable. All I wanted was to watch the World Series in a northern New Jersey motel (so I can see Boston win it all), and instead, I get to hear constant attacks on this or that in between innings.

Where are the good feelings, people? How do we stay active, informed citizens, when the landscape is so dismal with all its tellings of what is going on?

That said, how can this whole time of endless political opposition cycles that we live in not depress people, with or without Parkinson's? With two sides and no middle, where is the common ground and discussion for the rest of us who are content to live and let live, to be a part of our communities, and to want to make a difference for the world? Who is left to unite us when all we’re looking for is protection from and defense of as opposed to a solid message? That's not a uniter; it's a temporary reprieve.

But enough of that because there is art, which can be a powerful expression of sharing and creating emotion. While not all art is positive, that which is can be very influential to people in finding meaning and overcoming adversity. Even seeing sadness described, we can relate to people whose shared experience creates empathy for our plights.

For my money, New York is definitely a place to inspire this creativity, though given the choice, I prefer State to City (i.e. Ithaca, Letchworth, and Watkins Glen).

Nevertheless, at its most basic, New York City, the City that Never Sleeps, was built by creative and driven minds. Erecting buildings into the sky and digging tunnels underground to interconnect these worlds, millions of bodies and minds came together to build, work, live, sweat, and die together. I can’t help but thinking of what Manhattan once was (as wilderness) to the point that the industrialization began to the place that it is now (a concrete jungle).

I’ve felt this sensation of awe ever since my days going to London (1991-1996). As the skyscrapers tower over everything, it’s just so easy to get lost in the hustle, yet every person that is stopped, pushing, sitting, or yelling something is doing so from the perspective of a life lived. They built this or work within these buildings in an effort to produce something else. Their business desires made it possible and necessary. Each person who came to be born here was raised, educated, influenced, affected, and brought to be one with this place where endless traffic lines journey uptown, downtown, crosstown, or under the Hudson in an attempt to get in or out. People from other countries heard the call and chose to travel there as well, for the desire to support themselves and their families, as well as to be a part of this giant energy. Every single one of these buildings that seem to touch the clouds is made up of lives and stories.  In their own way, they were all someone’s something. They’re not just some exhausted body on the train or random European tourist, let alone a faceless blur. By being here, they become the voice of America, even if they hyphenate their original country with this one.

As people with Parkinson’s, our lives often feel like we’re on a journey to somewhere, just pushing through, too. Other times, they feel like we were on a journey, but somehow, we got derailed. If we’re not careful, we can start to feel lost in the journey with nobody around us who sees us as something more than another passenger headed for somewhere. We stop off to have our ticket taken. We order food and are served. We line up to go place to place. All the while, we start to feel disconnected in a world of people who are making connections but not really connected. How do we slow it down to see us and them as all being grand actors on the same stage?

In looking at it like this, we’re all journeying together to be here at the same moment in a life that was meant to intersect in Central Park, at the American Museum of Natural History, or within the packed galleries of the Museum of Modern Art. When we depart, most of us will most likely never see or know of one another’s existences again, but somewhere, in some corner of the globe, perhaps through photographic evidence, there will be traces of those moments where we played a bit part in the movie of someone else’s life. Maybe something we said will stick with someone. If this is the Butterfly Effect and one tiny action here creates an earthquake somewhere else, how can we stand out in the crowd to create something memorable and beautiful that will live on after we’re gone? What statue cast in bronze will be here for us? What street will be named after us? This isn’t about Andy Warhol’s 15 minutes of fame. This is about avoiding the third Mexican death and living on in the hearts and minds of others

What added value and creations will we leave behind for others to wonder who some “Daniel Webster guy” is almost 170 years after his death? Obviously, if this statue is here, he was someone, but just because someone set it there, is it actually someone important now or is it just a chance to reinvent history in romanticized notions of what never came to be?

With our lives, no matter whether they be Parkinson’s or Parkinson’s free, we are all on a finite timeline with an opportunity to bring value to the life that is sitting around the table waiting to be served, helped, entertained, or fixed. What have we used our brains and minds to do today? How will we be remembered? If this is our Day of the Dead, what words will people speak about us so we don’t reach that third death?

On our trip, we went to MOMA and the American Museum of Natural History, which are the kind of things that educate and inspire us (or they should). There’s something about being able to go into a huge hall with other like-minded people and reflect on Van Gogh’s Starry Night or works by Picasso, Monet, and Matisse. Of course, there’s paint scribble works by people like Jackson Pollack, though other people might find them to be meaningful. For me, as I said, I generally like my art to look like something, though I do like surrealism. Because of that, I was upset that Dali’s Persistence of Memory wasn’t on-hand (it was leant out). Let’s just say I didn’t feel the same about Andy Warhol’s Campbell’s soup can painting since he’s pretty much a hack (though I do like some of the Velvet Underground’s music). All the same, we took it all in, and I didn’t touch anything or give too many failing grades / comments out (at least out loud). Other people taking selfies and touching the frame of a Monet… not so much.

Don’t worry; it’s only priceless.

In the end, we enjoyed our time with friends and wandered the upper part of Manhattan and the beginning of Central Park (in fall). It’s really beautiful, even if it’s way too crowded. But then again, it’s the city. Of course, bodies are going to be pressed too close in the dinosaur halls of the American Museum of Natural History (minus it’s Tyrannosaurus, since the room is being remodeled). Fortunately, the oceanic life room is still available, as was the North American mammals room, the meteorite room, and the origins of life room. This, unfortunately, was all we had time for. Let it be known that I could spend 3 days in there, easily, if all the rooms were a go (gems and minerals were also down for remodeling). There's just so much there.

Because it’s all about expanding the mind.

As our Parkinson’s increases / we just get older, our minds often lose speed and storage space. I can’t say this doesn’t scare me, but while I can, when I can, I want to be living, learning, loving, and enjoying life. Parkinson’s has taken a lot from me, but sitting here, I don’t want it to make me a middle-aged man with his memories just yet. I want to find excitement and conversation and purpose. I’m glad I had this weekend (and Monday night when I went back to see my friends again in northern New Jersey) to do that.

No matter what the next years of Parkinson’s brings, I want to hold tight to the positive and push away the cold winds of winter as long as I can. Better to go gray / white with class (like George Clooney) than to end up feeling and looking old before my time.

Strength to Keep from Going Under

In trying to recover from the post-nasal drip that's been eating away at me and being limited on my medications, I've been taking it easy inside, for the most part, watching way too much Netflix and Hulu. For the past couple of days, this meant re-watching the early seasons of The Walking Dead, which I haven't seen since I first watched them in 2014, prior to playing catch-up to begin season 5. For those people who watch the series, you understand what the show is about. For those who don't, somewhere beneath all of the zombies and outlaw bands of people roaming the land after the zombie plague is / was a solid story about characters fighting for survival and keeping people going in spite of a horrible virus that had infected everything. If it were just 8+ years of zombies, it would have gotten old quickly, so what keeps it going is the characterization.

In looking at Parkinson's, that's a lot of what we do with this batch of nastiness that hit our brains and stole our dopamine.

For Parkies, while we're fighting our own real life monsters, you know the tremors, mood fluctuations, dystonia, dysphagia, dyskinesia, bradykinesis, cognitive issues, movement problems, loss of independence, and sleep issues that we face, we need to keep ourselves and each other up as much as possible. Granted, it's impossible to be up all the time, and it's impossible to keep the symptoms in check 24/7, but we need a plan to stay active, stay upbeat, and stay us at all times because it's obvious that we're going to hit the wall of confrontation at some point.

And when it comes, we need to be rewired strong enough to take the waves and the hurricane that is about to hit us and stay standing.

For caregivers, there's a front row seat to the game, which, frankly, sucks to watch "in sickness and in health" and / or the loss of family and friends as we know them (and there's nothing we can do to stop it - just comforting the patient with our "there, there" and "thoughts and prayers").

Here, caregivers need places where they can go to recharge before Parkinson's damages by association. In this, Parkies are not contagious, but the suffering sure is (truth be told, I can deal with a lot of things, but I absolutely loathe watching what Parkinson's does to my team).

There are a lot of things in this Parkinson's world that weaken our outlook on this whole game. Sometimes, they leave us with the nothing feeling of apathy, ennui, and general "don't give a hoot-ed-ness." Other times, these beasts consume us with the eating away feelings of depression and hopelessness. The existential crisis that is knowing we're becoming shades less than what we are is like starring in an updated version of Invasion of the Body Snatchers.

From the minute we notice the symptoms that need to be diagnosed and named to the diagnosis itself, there is a world of fear and uncertainty. Assuming we make it to this first crisis of faith in what hand we have been dealt, who we are, and where we're going, as well as the "why did this happen to me?" / "how could something this horrible be allowed to be?" / "how did it happen to me?" questions, we are faced with the 5 Kubler-Ross Stages of Grief.

1. Denial and Isolation
2. Anger
3. Bargaining
4. Depression
5. Acceptance

Depending on what symptom we notice first, we can figure out what is going to be the way that we will be tested on this journey, at least for the first part.

Just like with all other things, the key is to "be here now" and to slow down the movements that are affecting us. We need to approach them in a calm, logical order as long and as often as we can. Sometimes, this is realizing that I'm the car's passenger white knuckling it as my wife drives at night in the rain. The key then is to close my eyes and work on my breathing.

It's going to be OK. No cars are going to crash.

If it's tremors, we may start to wonder when will our hands become too shaky to do things like button our clothes. When will our shaking hands touch someone else and cause them to feel startled? When will someone else question what's "wrong" with us? When will we become too unsteady to work / drive / live on our own?

If it's cognitive, we'll get caught in the "when will we lose our ability to think / process / speak / communicate" trap? With these problems come issues of loss of independence, abandonment, and being a smaller part of what we once were. How can this not be big and scary, especially if we witness other people who are suffering or hurt by the process / side effects of the condition?

I know it's not optimistic to write these things, but they're things we face, so confront them, we must. When we do, we need to know who we can go to and how. We need to know how we can move away from these things in the now and build up our strength for the future.

Once lost, strength takes a lot to rebuild. It's not just hoping that "it goes the other way, too."

I've read a lot of books about survival mindsets, but I find that they only go so far, though I do have my favorites. There's no human contact in a book, so I'm glad to have an option like therapy, though with only 3 sessions in so far, it's still in that getting to know you stage. We talk about life, love, the pursuit of happiness, and fear, anxiety, problems, and life changes. It's nice to have another mind to offer solutions and alternative ways of thinking.

It's often hard to express the emptiness and pain of our lives to those closest to us since we don't want to bring them down. Nevertheless, sometimes we just need a hug and a big dose of love, even if we don't want to get into it all. I'd like to think intimacy is enough in a time like this to just understand everything in a tactile embrace without the exact words. Why say things out loud to make them "that real," unless we have to when the listener need not hear it confirmed? I guess that's a man thing with our silent conversations of what can be understood and not stated.

But what if we have to?

I know it's not for everyone, but theological opportunities can provide a foundation and a code that allows people to get through the emptiness. Granted, not every religious person (or therapist) has a working knowledge of the effects of Parkinson's, but they do know the effects of aging and the loss and pain that goes with that. Sometimes, it's good to have alternative avenues for discussing these things to keep home happier. As I said, therapy can also do this.

For me, early onset Parkinson's offers many challenges. I would say the biggest one is finding a meaning for my life.

Having taught for 17 years, I chose to give up the classroom in May. I often wonder if I could still be in the room, but then I think that at some point in the future, the time will come when I can't. I know there are things I could still teach, but at the same point, a nearly 3 hour class is a long lecture, individualized instruction time, class management, and a lot of what ifs as well as moving parts.

For me, management is the first skill to go. With shaking hands, how can we be seen as serious in instances of redirection if we're shaking? If we're shaking, is it because we're uncertain about our field? If students know we have Parkinson's, will they think of us as mentally dysfunctional if we forget something? Will our bosses think this? What about our co-workers?

As with any job concern, it's often understanding how we're perceived that is the issue.

For me, I know what I can do and what I can offer, even if my blank, unsmiling face doesn't show it and my occasional exhaustion prevents me from looking confident in my game all the time.

Because of this, it is in those type of moments of doubt that I (and we) lose our strength in all things.

In the Navy SEALs, there is a bell that recruits can ring if they choose to quit. Many times during the intense period known as Hell Week, this happens. The exhaustion, suffering, intensity, and pain get too much and people's minds and bodies give up. They wave the flag, and after being asked if they're sure, they usually say yes. Stories abound regarding ones who chose to come back for another shot. Even if they come back, eventually, they always quit again. Once their mind is made up, it's over.

I think this applies to anything in life. Thus, the question becomes, "how, when we're tempted by doubt and defeat, can we regroup before we get consumed by this enemy?"

I'm not sure I know the answer. Like you, I am tempted by a lot of bad stuff. None of this is fun. Like you, I am physically, mentally, emotionally, and financially tortured by this game. I hate it, and I wish I could be magically cured so that I can be non-Parkinson's Dan (whoever he was).

That said, I know that's not real. For that reason, I push on with how some of the answer is to stay loose and stay positive. I know that it's important to never let anyone "steal your sunshine." It might sound odd to say, but if you're holding the wolves at bay, even if you're in the dark about what comes next, you're in a better place than someone who is thinking 3 stages ahead and living scared. Yes, we're all afraid of the end stages, but we're not on a timeline (I tell this to myself, too, so that I believe that), so live for the good times and shake off the haters (Dan, this means you, too). We have to believe that there are good times ahead and positive moments to experience.

There has to be a reason for this.

Mike, my therapist, and I discussed this. We talked about staying a "teacher" even if I'm not in the classroom. In this, I can write my lessons as essays, which is easier than speaking them. People can read them and learn from me. I like that. It's something that keeps me going. It's why I do this whole blog thing (since I'd like to believe that I have something to offer).

Another important step is counting the little things that go right instead of multiplying the bad things. It's been kind of rough around the campfire lately with seasons changing (that seasonal affective disorder thing, allergies, the looming future, and aspiration pneumonia fears after previous hospitalizations for chesty stuff that didn't get better). Is much of it unrealistic? Most likely. Is it real in what my mind is telling me? Yes.

Do I need to find the strength and happiness to keep from going under? Definitely.

Do I need to push aside my unrealistic excessive thoughts of how I look, thinking I'm a walking case of Parkinson's 24/7? Hell yes.

Sometimes, just the simple act of writing it is cathartic. Never surrender.

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 ProCon.org. 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.