State of the Blog

It's been a long time since I wrote anything here. I thought I would for Christmas, and then time got away from me. I didn't even have time to post last year's Christmas thoughts. I also thought I would be able to write for the end of the year or New Year's Day, but I didn't. Then the new year started to progress and with that, my wife's and my trip to Italy (Rome, Venice, Florence, Pisa, Pompeii) was coming up (we needed to get ready for that), so by the time we got back from that, I was on an intense working 2 jobs schedule with lack of sleep and sinus crud for a week before rest, recovery, and have to as well as downtime.

Somehow, I made it through, and well... here I am.

As a Parkie, I can say that I definitely need some downtime when the world is just too much. Being alone or being mindless with the TV are good things, even if they aren't productive. I'm sure a lot of you in the early stages, like me (I'm somewhere in 2), are experiencing that now. I'm sure others of you have experienced this. Sometimes we get too tired to sleep, let alone read or function as anything more than "I must get up and refill my drink and get a snack." However, it's at these moments that we have to move and fight back against PD.

Yes, it's at these times we have to stay mobile and active. It's been said by many; exercise to decrease rigidity and disease progression is essential. For this, I'm glad that our local rails to trails (above) is finally finished. Yes, it seemed to be raining a lot last year, but sometimes we just need to push through it (as long as we can take care of ourselves while doing it). Our bodies will appreciate it. I know mine appreciated being walked so much in Italy (my dystonia even cooperated!).

One of the things that I'm contemplating writing is how much the fluctuating dopamine in my brain produces a wave of different emotions and responses. Depression, Anxiety, Anger, and Irritability. Yep. They're the 4 Horsemen of the Apocalypse of My Brain.

But I don't want to think about that now. I have a chance to write something to start a new year out here, continue to sort out my pictures from Italy (color and black and white - note since it's Italian art, not everyone - i.e. David and Venus, as well as many other artists' subjects - is fully clothed, so view as appropriate!), as well as write for Parkinson's Disease Dot Net, so I think I'm going to go to my mellow place since my wife is home (early, like me) safe and sound. As the snow piles up and the cold comes in, I expect it to be a horrible icy morning tomorrow. I'm hoping the last of my snow days can fight it because the roads were nasty this afternoon.

Home and protected from that is a good thing.

There's something about home that really feels good. It's the feeling of being safe, loved, and belonging where I am. There's something comfortable about the couch, too. Sure, home isn't like being exhilarated in the great outdoors or in some spectacular man-made confines, but it definitely works at the end of a long journey.

All in all, my time in Italy was a great trip, though the comparison of poverty to wealth showcases / priceless art galleries is very sad. When homeless people are passed out and practically living on the steps of ornate churches that are covered in pristine sculptures, paintings, and mosaics, something feels "off." I'm not sure what the answer is, but it was something I noticed. We much preferred Venice and Florence for the art and architecture. Pompeii was also incredible, but I'll elaborate on them later.

We returned home to the cold and respiratory crud, which isn't fun, but as I said, there's something about being home. I like how John Dos Passos expressed it in the U.S.A. Trilogy (written after World War 1):

“U.S.A. is the slice of a continent. U.S.A. is a group of holding companies, some aggregations of trade unions, a set of laws bound in calf, a radio network, a chain of moving picture theatres, a column of stock quotations rubbed out and written in by a Western Union boy on a blackboard, a public library full of old newspapers and dog-eared history books with protests scrawled on the margins in pencil. U.S.A. is the world's greatest river valley fringed with mountains and hills, U.S.A. is a set of bigmouthed officials with too many bank accounts. U.S.A. is a lot of men buried in their uniforms in Arlington Cemetery. U.S.A. is the letters at the end of an address when you are away from home. But mostly U.S.A. is the speech of the people.”

Yeah, there's something about finding your car at the end of the journey and reflecting on all that is and all that we are because of it. "U.S.A. is a part of my identity, even if I'm seeing the world."

For me, the best part of the journey was being speechless and in tears from the beauty that is the Sistine Chapel (Virtual link here). I had seen God and Adam's hands touch before, but I never saw the totality of an act of discipline, talent, and faith quite like that. For the first 10 of the 15 minutes of our tour, I couldn't figure out where to start, it was just so immense. I'd love to just have an afternoon to sit there and feel the power of Michelangelo's art, but alas... tour schedules limit this. We spent over 2 hours in the Vatican Museum and still didn't see everything.

And yes, I did get to take my Nana to the Vatican. I think she would have liked it.

The lowest part of the trip was "crashing" emotionally at the Colosseum. It's a longer post, but essentially between running late + missing our tour (we rescheduled for a different day), not eating / drinking / sleeping regularly, and being harassed by street vendors, I had enough, and I found myself sitting on a bench with my wife, crying, as I told her she didn't understand how bad the Parkinson's emotional hell ride can be.

I don't understand why the Parkinson's emotional hell ride is as bad as it is. How can someone who doesn't have it understand? At least there's empathy and support to compensate.

All the same, for the state of my blog, I'd rather just focus on things that make me happy, like free breakfast day at work or when Bryce Harper and Manny Machado will "settle" for their contracts.

After the trip, I decided to take an art history class (free through work). It's the first class I took since 2010, and it's my first online class. There's a lot of neat stuff to learn in it, and I want to be able to talk knowledgeably about art when we go to museums (next stop Athens, Greece, in late March). I also don't want my wife to worry that I'll either make her take pictures of me in front of paintings or try to touch a statue or painting. Hence, this seemed like the right class. Besides, learning is a good thing, and I believe we should all engage in lifelong learning as much as possible. Most of us have learned a thing or 2 about our conditions over time. Why not learn something fun, too?!!

As I sit in the online class responding to discussion posts, I find myself missing teaching. Now, I don't miss the grading or any of that stuff that goes with management, but I miss the "being involved in active transmission of learning." Contemplating that, I realized for the first time since I made the decision to not teach that I missed something about teaching. It felt like a void in identity, as if a part of me was "changed." Maybe I can find a way to philosophize at the Pantheon or something, but for now, it just feels like a part of me is missing.

Damn you, Parkinson's!

So yeah, here I sit, contemplating how to take my blog back from the "bots" that invade from foreign medicine or NSFW websites. Yes, as a blogmaster, I see where my traffic comes from (while not posting regularly, much of it was coming from Russia). Hundreds of hits would come out to link to my Parkinson's discussion. I can see what there names are. Mostly, they're just "hands off" type names, but the first one I clicked wasn't. Bad move. I'm not bothering to look at these again!

In the end, I have no idea why these people link to me. There's only 1 post on PD and effects down there, and it's hardly tantalizing to reflect on how PD affects urinary and sexual functions.

I also have no idea why I get inundated with spam from med sellers. Has anyone ever clicked on 1 of those buy medicine sites that they see in a comment list or e-mail? Man...

But yes, here I am in 2019, thinking about how we're almost 1/12 of the way to 2020, thinking about all of the things that I want this year to be, and thinking about how I still appreciate everyone who reads, read, reacts to what I have to say. There's still more to talk about.

It's just a question of time to do it all.

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.

47 Times around the Sun: Happy Thoughts from My Life with and without Parkinson's!

It's official! This year is the Jack Morris birthday! That means that on Sunday, I will have taken 47 trips around the sun. So rather than waste time with that which causes me many anxious moments, I focus on my happy day of the year, which is always celebrated in honor of a baseball player who wore the number (in this case, a Hall of Famer who out-dueled John Smoltz in a memorable Game 7 of the 1991 World Series).

Here are 47 happy thoughts for my happy day.

1. Fellow Parkies and Parkinson's Warriors... you rock!

2. The wisdom to know that faith, philosophy, and beliefs / outlook aren't based on the horrific misdeeds of other humans who "claim" to be a part of them (thus making me want to abandon my faith altogether), but rather in knowing that they exist in understanding spiritual / religious ideas as a greater concept by a greater being. That said, people who use their "faith" for the kind of evil I'm referencing have a special Hell awaiting them. Methinks their meeting will be "problematic."

3. The Throne Room on the Standing Stone Trail in Pennsylvania - I'll be there tomorrow.

4. Spruce Knob on the Mid-State Trail. I'll be there on Sunday, sitting in the cat bird's seat / concealed bird watching area.

5. Being in nature is a good thing. Between the trees means letting my worries drift off and my belly melt off!

6. Vistas like Butler Knob (I'll be there Saturday) inspire with such infinite panoramas.

6. Trying to sell my wife on camping at Butler Shelter on the Standing Stone Trail.

7. Where are my friends the bears?

8. Granted, I'd rather see one alive, but my wife might have words about that.

9. Memories of that time I saw the bear cubs scurrying down the Batpole near Priceless Point on the Standing Stone Trail!

10. Sitting fireside this weekend with my wife while we cabin camp at Raystown Lake!

11. Being mellow and reading by the water's edge at Raystown tomorrow.

12. Magic fire colors... fun! fun! fun!

13. The volcanic planet of Mustfar and the days when Star Wars meant something.

14. Feeling like I'm owed a real-life rattlesnake sighting this weekend... from a safe distance

15. Family and love are a good thing!

16. Memories of the Muir Woods in California.

17. Memories of the coolest city in America - New Orleans.

18. Dreaming about going back to New Orleans!

19. Memories of Cancun, Mexico!

20. Dreaming about Rome.

21. Dreaming about seeing the Great Gallery.

22. Watching travel videos of Greece with my wife since she's dreaming about them.

22. Marketing my books for a greater audience!

23. Dreaming about seeing the Faroe Islands.

24. Writing places into my story (like the Faroes) because I want to see them. Yes, it's a poor substitute, but it works for now.

25. This island castle (Loreto) is too cool (and it's in Italy).

26. My nephew Dylan, who is obsessed with gators, snakes, and lizards.

27. Getting to see the Hunchback of Notre Dame this year. And no, it's not about an Indiana college.

28. Blue ube and raspberry ice cream from Fox Meadow's Creamery.

 29. Friends of the family who look out for us (my mom's friend Linda made this prayer shawl for me).

30. Playing with the puppies at the mall.

31. My wife who is all about home repair and refurbishing!

32. Getting a really cool poster made from my book's cover.

33. My attempt at inspiration via bulletin board at work.

34. Inspiration is a good thing.

35. Laughing at mindless comedies is a good thing (Happytime Murders).

36. Music to rock out to (Elf Power - Nothing's Going to Happen)

37. Pearl Jam's live CDs to download.

38. 9 years of marriage and many more to come.

39. First days of school... even if I won't be teaching this year.

40. Free breakfast at work day.

41. A wife who can make anything fit in her car.

42. Libraries for books, CDs, DVDs, and so much else.

43. Michael J. Fox and Foundation for everything you did, do, will do.

44. Health Union's Parkinson's division to post my writing.

45. The fact I don't wear a mustache anymore (that ended soon after this age 20 photo).

46. The fact that, at some point, Beyonce's career and ruining of Jay's music has to come to an end. Seeing as her last good song came out in 2007....

47. Friends like you for reading my writing until the end and who follow me on Facebook, Google, and all else (especially in real life - gracias!)!