Identity and Diagnosis

Last Thursday I sat in the therapy chair as Mike, my therapist, and I discussed my life post starting a new job / new chapter of my life (full time with excellent benefits and an opportunity to make a difference for people). Essentially, many of the worries that were affecting my future were gone as I found my way to be the me I wanted to be (busier, more helpful, etc.). The session prior to that, the out of control Parkinson's life had caught up to me and body slammed me for the first time since its defined self came into my world, but good.

In hindsight, it was good to be able to have someone to talk to. Hug therapy and stoic philosophy only go so far. That said, a gift from the universe helps, too. Sometimes, we don't know how lost we are until we hit some ugly realization of the storm we're compensating for.

Anyway, at the early October session, we were talking about maintaining identity, which is something that every single person on this planet contemplates, whether actively or subconsciously. We want to know that we are something good and existing as us, not some bull in a china shop who is brushing up against things and knocking them all around.

As a Parkie, life is about balancing the new me with the old me. Like many of you, I had a life of who I was before Avalanche Day. Today, I am a part of that person. However, I also get to be parts of me that are Parkinson's.

From the minute Parkinson's symptoms came into play, minuscule fractions of that guy vanished as the bridges and highways of my brain were affected. The infrastructure of my brain slowed down, and I compensated in balance / posture / new ways of doing the same old things. Along the way, I adjusted my life accordingly.

Mike and I talked about one of those adjustments, which was giving up teaching. As a lover of knowledge (my geeky side) and a person who values education, I didn't want to lose that sense of who I was, after all I was fated to be a teacher all those years ago when I drove through Nevada for the first time.

At that point, we discussed how writing about Parkinson's is teaching, though it feels different. I see it as more sharing the experience so you can see the road you may find yourself on. I don't lecture a room, record attendance, grade papers, or demand cell phones are turned off when I'm writing! Then again, I'm not actively guiding people through feedback or directions of how to accomplish things when I'm writing either.

Mind you, I don't miss grading papers. I sometimes miss the lectures, but as a whole, other than the individualized guided help sessions and opportunities such as encouraging students to do things like go to academic conferences, I miss it a lot less than I thought I would.

Nevertheless, I still feel a teacher's voice inside of me, just in another way and for other things.

This leads me to where I am at this point in my life (as thinking like this does you in yours). Of the things that define you, how many of them are you doing?

I am a traveler, and while I'm still driving, I'm now the Jack Kerouac to my wife's Neal Cassidy (she drives while I'm riding shotgun, but we're still On the Road). Fortunately, I had my cross country jaunts, so I can always look back on those days as an "old man with his memories." I would encourage anyone to hit the open highway to see the world. Culture is best experienced in person with history and society flowing in our veins. You'll never regret anywhere you went (only places you should have gone).

I still go hiking, but the distances are far shorter, and there's a lot of time between the hikes. I definitely need to remedy this.

In our most recent trip, last weekend, my wife and I took in the Great Falls of the Potomac on the way home from Baltimore. We had been there before, but this time we saw it in autumn with rushing waters (instead of spring colors and low water). It's a short walk down the Potomac to do all the vistas (maybe a flat mile round trip). It's very accessible if you're tempted to go, should you be in the Baltimore / D.C. area.

By the way, people with permanent disabilities can get into national parks for free.

Yes, that is a rainbow on the waters!

I'm still a writer, though I haven't found the time to write fiction or non-fiction lately (until the snow day I was on earlier this week - work let out early, though it took 3 times as long to get home!).

I'm still able to love and appreciate the sci fi / archaeology / history / supernatural stuff, but that's not a defined version of me (just an interest umbrella).

I still follow baseball, though I'm not as devoted to it as I was when I was single.

I still find time to read, the news / non fiction / fiction. However, the anxiety I feel while reading them isn't proactive to making me happier. Then again, I don't think many people are content with right now.

I still love music, though I don't really find much connection to new releases or discovering them in the way that I used to. That said, it's not like I'm hurting for things to listen to (it's just I've heard many of them before).

I still eat too many cheese steaks for my own good.

I still enjoy the random sights and sites of American culture and all that it offers to do (music, theater, roadside attractions, historical places, unique fun experiences).

But what is this to my identity?

I can't say I'm identified by a sports team. Yes, I found myself rooting for Boston in the World Series, though I would have rooted for a good game if not for Manny Machado and his history with Boston and the rest of the league. Is it enough to just be a fan of 1 sport?

I have a sense of spirituality, but I'm not someone who recruits for my religion actively and openly, let alone wearing a badge to show my denomination. Nevertheless, I feel a definite need for God.

The same is true for my politics. Being in the middle, I find it hard to know where I am when neither side represents all that I am or am not. Nevertheless, I'm open to compromise and the best of both worlds.

It would be so much easier to be Mike Pence who is Christian / conservative / Republican (in that order). Instead, I often feel like Eugene O'Neill's hairy ape, struggling to fit in. Yeah, being a bull in a china shop is never easy, but it's the lot that Parkinson's leaves so many of us.

On much of that same note, I'm not self-identified by my colleges, nor do I feel an overwhelming connection to the military, though I am who I am, for better or worse because of my time spent in these institutions. I respect people who are. Maybe if I had been on a ship or in a combat unit, I would feel closer to that post discharge place, but that wasn't my military self. Likewise, if I had been into the tailgating / football Saturday world, I might feel differently about college as a name of where I went, but for me it was just an opportunity to learn. Nevertheless, I do feel a connection to professors who gave me that chance and their individual attention.

Obviously, like many of you, I have Parkinson's, but I'm not claiming that as my identity. Yes, there are the disclaimers and symptoms, but I don't want to be defined by this (as you don't either). I definitely don't like that it robs my old interests from me!

So what am I?

Sitting down with my Office of Vocational Rehab guy, Gary, who is also a good guy, we also looked at the results of my neurological baseline test.

On the positive side, I'm still thankful for the intelligence parts, but I think about the loss of speed in making decisions and the memory parts. I think about how Parkinson's has affected my personality, and how complicated it makes things sometimes.

Tom Friedman writes about the speed of Walmart's Internet site fighting to keep up with Amazon by accelerating search logarithms in fractions of a second to keep people hooked. While we can't see loss like that in our life (because we've compensated), it shows up like it does at the Daytona 500 when cars that are a mile or 2 slower an hour than the leader are lapped over and over. Here, it's all in comparison. My life didn't notice my inability to match symbols as quickly as I should until I was compared to other people. Then, I realized that I don't have the ability to save the world with instantaneous decision making anymore.

Besides, that's what we have Chuck Norris for.

So it goes.

Thinking back to the neurological baseline test I took 8 weeks ago and all that it was, a series of tests, some challenging / fun and some seemingly impossible / frustrating. I'm sure other experiences will vary on the Weschler Test, but I will say that my time with it left me feeling a few things.

Obviously, as an intelligent person with Parkinson's who is losing / will lose his mental functioning over time, it leaves me wanting to "leave less of a footprint" on the world around me. In life, I and many other people have opportunities to impact a lot of people who we know nothing about. The acronym below is a good model for me and others to fall back on. Even with Parkinson's face and voice mixed with being in a world that is pretty Dan-centric, that is a challenge since dopamine can leave my mood fluctuating. Whether it's not smiling enough or being "snappy" at people, it's not passing a Dale Carnegie class.

Hence, I'm working on it.

As teachers / professionals / leaders / the adults in the room, people have to do a lot more to tell other people why they need to do specific things. Because the syllabus / boss / doctor / parent said so isn't good enough. If I'm doing something that challenges me in a way that is beyond my abilities, I need to know why. Even the concept of folding t-shirts into 6-inch squares and tweezing the ends to get them even (spraying them with starch to stay there) had a purpose (attention to detail is everything with lives on the line - though my ability to fold said shirts wasn't something I could use to stop terrorists). I'd like to hope I've always done this as something more than "because I said so" (for instance,  we need to learn Civil War history in English 11th grade to understand the story Gods and Generals; some people don't even know the Abraham Lincoln part of that). 

As an educational professional, I can tell you that many college majors are losing math requirements that don't matter anymore for them. Algebra doesn't need to hold people back from a job unless the job requires algebra, trigonometry, or calculus. I used to believe this was watering things down. Now I see it as creating people who can get paid to make a difference for others while financially supporting their family units (self / others). 

Here, I also feel we should be more open to questions and issues that people might have while going through the process. Not everyone is attacking our credentials. And yes, I know I have to work on this.

As for my personal areas of frustration:

On said psych test, listening to Casio beeps from the 1970s might tell if I have hearing issues, but on an ancient audio cassette, they all sound pretty similar. That said, I know I have hearing issues. I just would have liked a clearer range of sounds as being different or the same to feel like I had a fighting chance at the questions.

Listening to 15 or so pairs of unconnected words read off like an auctioneer and being asked for B when the tester says A feels like something designed to trip people up. Doing something and coming off terribly in the response doesn't feel good, even if we end up in an average or above average percentile when compared against other testers.

Hearing 10 "incorrect" responses in a row on a series of pattern questions when we can't figure out the pattern is very demoralizing. Additionally, when we're told to guess anyway, having no idea what's correct, feels like setting us up to keep hearing the response of "incorrect." Had I guessed correctly, the answers would have been worthless. That's not fun when I already feel like I have a condition that's literally causing me to "lose my mind."

A test like the blindfolded project to put shapes into a standing board with 1 hand makes a lot more sense when the OVR guy says that this is the skill that electricians and HVAC people use when they're working in hidden, enclosed spaces as compared to just the feeling that I need to do something or I'm uncooperative and venting, or prone to my own way (though in actuality, I can be all 3 things for plenty of other reasons, too).

In the end, there are times when we need to suck it up and do. Going into something that is that kind of a necessity goes a lot better with an explanation / disclaimer in the beginning than a feeling of "you're here; now perform."

My time with the test was rough, but I finished. I didn't not want to finish. Some people get frustrated and walk away. The doctor even stated this when I asked him how do other people do.

That said, a test that is for our own good shouldn't make us feel that way.

Should you take the test, I can only say this is a test of you. However, you can't study for it. Nevertheless, you can know what it's trying to get out of you. You should ask questions. You shouldn't be left to feel inferior or a fraction of yourself (like I did) after taking the test.

Take this not as a validity of the test, but rather as words of advice to the next tester, should you need to get one to show disability.

And please remember, your test scores are not your identity unless you let them be your identity.

And this brings me back to my identity now.

I'm still almost all the things I was back in the beginning of this blog...

I am a husband to Heather

I am a son to John and Essie

I am a brother to Beth

I am a nephew to Toot, Dave, Pat, Steve, and Deb

I am Big D’s godfather

I am Uncle Dan to over 20 different kids and adults in Pennsylvania and Ohio

I am a cousin and all other kinds of family related tags

I am a friend to some really great people who have listened to my story about this and been there in good times and rough days

I’m a Berks County Boy living in Ephrata, smack dab in the middle of Amish Paradise

I am an educational adviser who works hard to push people to be great while teaching them how to write well, and for this, I’ve seen some really great people I feel awesome about working with
I am the proud product of a community college, which transformed my life
I am a writer of ghost stories, Parkinson's blogs, and outdoor tales
I may write ghost stories, but I believe in God and the power of true love
I went to a Catholic college whose teachers also influenced me

I am a hiker who is active in hiking groups to include the Standing Stone Trail, which in my humble opinion is the best trail in Pennsylvania

I am a photographer

I love music from all genres, especially Polyphonic Spree and Neutral Milk Hotel

I’m a baseball fan

I served in the Air Force

I like chocolate iced donuts, cheese steaks, and pizza more than I should

I’m heavily influenced by stories of people overcoming hardship.

I have a weird sense of humor

I’d like to think I’m a good person, but I’ve done some knuckleheaded things that I wish I could undo, too
The Stockdale Paradox is my defining code.

In the end, I am me. I am working to better myself and to enjoy life without getting so hung up on the feelings of futility and sadness. Whatever that may be, so be it. That's me!

Sometimes, all I need is a little push of inspiration from a great therapist. Yeah, that session was my last one until I feel I need him again. The same is true for my Office of Vocational Rehab case, though we are going to meet up again, eventually, to discuss potential work needs or progress.

It felt good to graduate, even if it's only a chapter of my life.

Additionally, sometimes all we need is a voice for the cause... but that's the next post to come (with American Ninja Warrior Jimmy Choi and my wife Heather; yes, he really is that awesome in person).

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.

My Second Anniversary of Avalanche Day: 25 Thoughts and Related Learning for Life 2 Years into the Diagnosis

Birthdays are special. People celebrate us and rejoice that we're alive another year. We get presents. We're treated like the King or Queen of the World. I"m not an exception to being down with this kind of treatment.

My nephew Dylan can't wait to celebrate his birthday on October 4th. He'll be 5. Because my parents will be away for his birthday, they are choosing to have his celebration early on the 29th, so when my wife and I finish selling (hopefully lots) of copies of my books at Selma Mansion's National Haunting Day, we'll celebrate with him.

Thinking of that, I ask what would you do with a second birthday? I know what Dylan did with his.

Would you get a bouncy house, a clown, and an ice cream cake? Hit all the free meal places? Make everyone sing to you about how special you are? There are so many options. Where to begin?!!

Unfortunately, that's not a real world option for most people since we are only given one.

The only example that I know of people getting 2 birthdays is when people are wounded seriously in defense of our country. Here, military people who are injured and by all reasonable calculations should have died (i.e. "how did you get out of this? You must have a guardian angel looking after you."), get what's called an "Alive Day." They get a chance to celebrate being alive after they make peace with death or wake up long after the event to say,"What happened here?" 

I don't want 1 of those. I don't want 1 for anyone. That said, I respect the sacred nature of sacrifice in that loss to let in influence, but keep it separate from my own because mine wasn't about cheating death; it was about not inviting death to come to me.

For me, I didn't suffer my injury while defending country / way of life, but just like many people of all ages, I got hit with my a brutal landslide of "welcome to the word Parkinson's" news on September 27, 2016. After waking up the next day, I knew I would never be the same again.

For this, like anyone else who has a life-changing event, we pick ourselves up and start new. It's like a new life in a video game, except we still have baggage from the last life to sort through. The difference is that we get a new perspective on life.

I call this day "Avalanche Day" since it represents being knocked down by a ferocious train that lacks any and all respect for what it wipes out. We can choose to be buried, or we can choose to shake it off. It's our choice. What we do with our extra time and learning is our choice.

This could be any medical diagnosis. This could be the moment someone needed to leave an abusive relationship, quit drugs, go back to school, or get out of town rather than end up dead like all those around said person. It doesn't matter. We need to be prepared to deal with life's hardships, or... 

The Not So Good Place.

When it's done, you either clear off the snow and ice, or you freeze to death.

Mountain climber Cory Richards chose to climb out and clean himself off in order to live. What he didn't know when he took the above picture was that he'd battle some serious crap after shaking clear of the physical impediments to find a whole lot of mental ones. I recommend googling him. There's a lot of great stuff out there to include videos.

Because Richards' story was current at the time of my diagnosis, I reflected on this story and chose to make it something personal to me. Had I been watching NASCAR, I might have called this something related to a vehicular accident. Nevertheless, I'd like to think that, like Richards, we can get up after an avalanche (whether on our own or with help). We probably wouldn't get up if we were hit by something moving as fast and physically heavily as a freight train. Like Richards (who suffers from PTSD), we will have our demons, but our question is whether they will have us.

Who's giving who the Rock Bottom is very important.

Having the option to choose positive after negative news is a powerful thing. What will we do with the situation we've been given? Who will we become? Will we fade away, burn out, hold strong, or will we somehow become more powerful, like some Ben Obi-One Kenobi as he was struck by Darth Vader's clumsy light saber attack in the first Star Wars.

In the end, it's all about the Jedi training. No matter what battle we are going to face (bad grades, breakups, getting fired, getting a pimple on prom night, not being bought a pony), we need to wire ourselves to be stronger or...

The Not So Good Place.

That might seem like all or nothing, but winner take all battles usually are.

Because of that I'm different than when my diagnosis was confirmed.

I've changed from last year, too, for better and for PD making me a little less.

However, this is me today:

New years give time to reflect... here are my 25 things that Parkinson's taught me this year.

1. Love is a good thing. Family, friends, co-workers, random strangers, and Facebook acquaintances. We need one another in different ways. Share the happy. Be excellent to one another. Good people are all around. Just open your eyes. Encourage the fight and the joy when you get there.

2. Humor is a good thing. It's bad enough bradykinesia takes our smile and our melodious voice, but our sense of humor, too? No way. 

Case in point: a few weeks ago, my wife was doing the pet me on the head like a dog thing (I like it - I call it a brain massage), but I had to warn her about getting close to my ear, especially my left one. It's very sensitive to sounds (ice shaking around in glasses, crinkling potato chip bags) and touch. There went my brain massage. The next day we went to the Lehigh Valley Zoo. There, we chose to feed the lorikeets. The rules are simple. You hold a cup of nectar out, birds land and take it all in, you don't touch them, and life is good. Well, after finishing off the cup, the bird went for my ear and stayed there! If God / the Universe doesn't have a sense of irony, I don't know who does. As the volunteer tried to talk the bird off my ear (it didn't work), my wife and everyone laughed while I had a once in a lifetime experience with a bird enamored with eating my earwax.

And yes, I could feel myself doing the Parkinson's stiff forearm shake and scrunched up face as it all went down.

3. Parkies, while potentially having the PD seed in us from birth, lived for a while before the stuff came down. My main symptoms began in 2011, but I remember rigidity since the mid 1980s. That leaves us in a unique predicament of accepting diagnosis, recognizing disability, and fighting off the feeling of being "disabled" (a linguistic / self worth / health condition that comes with additional baggage and greater lack of independence for many people). The good people of Health Union let me write a great article about THIS and staying active. My point is that our disability and life issues are different, though we should stand for one another. Some people, instead, will see our accomplishments as the results of a good day or come with a warning to wait for the bad stuff (as opposed to advising on how to get through the bad stuff). On my GRR days, I'll go off about not letting people be a psychic vampire on who we still are and what we can do. On other days, I'll think about how our accomplishments are special, how talking tough about Parkinson's is a mantra to stay positive (remember - the Not So Good Place). Besides, if the first years are "easier" and people aren't able to accept their diagnosis to fight it, how will they ever comfort themselves in the "harder" years? To me, it has to be about that attitude. For that, I choose to be a Parkinson's warrior.

4. Time is a wasting, but we're not on a timeline (though some things that we love are: driving, working, dunking on Lebron). Fulfill your bucket list. Never stop finding things to sneak in there. Up next for me is taking my nana to the Vatican in January (in the form of a picture since she died in 1993). My wife and I will be doing Italy for its architecture, art, history, romance, and culture, but when we go to the Epiphany mass and Necropolis, she'll be there in spirit. I think she would have wanted this.

5. HANGRY - it's a combination of hungry and angry (as coined by my wife - she can feel it coming in me - yes, it is that palpable). It's also my evil nemesis in the game of Parkinson's emotional overload and irritability. Simply put, when Dan gets hungry, he gets really grouchy. It's not him; it's the PD griping. Warnings have been established, but in the brave new world of future issues prevention, a snack basket will be assembled. Dan has many other little irritabilities that cause these problems. He's working on it. It's in progress.

6. Not to sound like Nelly, but it's always hot in here (Not just getting hot). This is the first time that I'm going to say it, but I'm glad autumn is here and summer is over. Pennsylvania humidity is awful since I have hyperhydrosis from my Parkie engine running hot. To put it into perspective, my neck hump has been so hot this year that I feel like I could have cooked eggs on it.

7. My Parkinson's gait is establishing itself pretty solidly. I support myself getting out of the car, and I feel like I have a cement boot on my left foot. I seem to sway more, side to side (no Angel's Landing walks for this guy (see above - definitely not my video)). Also, my dystonia seems to be moving to my right foot. Both of my hands have been claws for ages, but it's not pro-wrestler cool. Some days, I feel the slowness in my joints... gone are the 80 word a minute days of typing. But still I type and write because I can. Nevertheless, my friend sciatica knows its way to the house. It has a key and can let itself in.

8. Yes, Parkinson's comes with politics: Stem cell research, access to healthcare, access to insurance, lifetime insurance spending caps, legalizing marijuana, disability rights + payments, making medical decisions, euthanasia, funding research, standards for healthcare, and affordable medicine. Partisan politics is not politics. It's hating people because they aren't your narrow identity of what your party should be. The politics of Parkinson's largely represents what we need for ourselves and our communities. It sounds kind of selfish, but really, it's about keeping us and our families / friends alive. I'm not here to tell you how to advocate since that's not my job, but I will say that we need to provide safe, compassionate treatment for people with Parkinson's / related disorders. We need to find a way to get better, and we need to be there for one another. Many people are 1 issue voters, and that's their right, but I will say that Parkinson's has me considering my beliefs in a more compassionate way than before. I'm sure it has affected many of you in the same manner. I'm glad to be alive, and I'd like to keep it that way.

9. On that note, my hemp oil experiment has been moving along. It's hard to tell what effect it has yet, since it's early, but between that and going back to Amantadine, things are getting better. I will continue to stay on it for the bottle and evaluate fully.

10. I recently began therapy with Mike. We had one session. He solved me. The End. Not so much, but we started talking about things like identity. Up next is how to avoid Parkinson's irritability, overload, and purring like a cat. Truth be told, he seems like a good guy.

11. I had a neurological baseline test done to tell me what my neurological and mental functioning is like. In the end, I think it did more to show just how "off" I can get when impossible problems are thrown out at me. Some of it was a fun kind of challenge. Other parts were worse than a spinal tap since they felt unsolvable and endless (6 hours on the test, 2 more on patient history). I'll get into a lot of detail with this when I get the results.

12. My newest symptom is drooling in my sleep. It's not nearly as cool as when Homer Simpson does it, but I have officially added that to the list minus the donuts!

13. A fair bit of people complain about their doctors. Not me. My doctor gets it, and I've been more than satisfied with my treatment from him. If you're near Reading, Pennsylvania, let me know, and I'll give you his info so that he can help you, too.

14. Working and disability and all that good stuff: I'm still capable of so many things, except when my symptoms get messed with. Two trips to the hospital took a big toll on me from Christmas to today. This led to getting investigated in sleep and swallow studies, which isn't a lot of fun either. It's like everywhere we early stages Parkies go, we have people wanting to give us another condition. At some point, it gets overwhelming. I understand that moment of wanting to say, "Screw you guys. I'm going home."

However, when we're getting told what we also have and being looked at as "the shaking person with the slow brain" when it comes to finding financial stability in the form of a job, it's really frustrating. That said, the disability process is a long, arduous one. Through it all, we try to be us, but we're fighting a lot of symptoms people don't see. I think you all get how contradictory and befuddling this whole thing is.

15. The only things I'm telling you that you HAVE TO DO:

A) Start figuring out who will LEGALLY make the medical decisions while you have time.
B) Stay loose and as active (and safe) as possible to cut down on the rigidity.
C) Find positive interests you like doing to replace ones you lose.
D) Figure out your financial future with organizations, advocates, and family.
E) Put positive messages anywhere you can to drive yourself forward.
F) Reward yourself for your victories, no matter how small, big, or fleeting.
G) Find a way to still love and be loved. Nothing ticks off Parkinson's worse than a truly "We're not gonna take this" attitude.

16. Nobody has a monopoly on sadness or grief in this Parkinson's game. With that said, sometimes, we're the ones who have to be tough for those around us. Work to get through the rough times by being there for others. Our strength, smile, and desire to be go further than you can imagine.

17. I was going to die before I had Parkinson's. I'm still going to die with Parkinson's. A lot of us worry what the end will be. A fall? Dinner with a serial killer like aspiration pneumonia? Something with dementia? While we're all wrapped up in the King Kong and Godzilla of tomorrow, we stop thinking about today and enjoying ourselves. If we don't choose to live out loud now, we'll lose a lot of time where we could have done things. The truth is we don't know how or when or why we'll shuffle off this mortal coil when the time comes. I only hope my time has nothing to do with The Nun.

18. On that note, in between writing my next fiction novel (Ascensions), I still find myself working on my Parkinson's book, Real Life Monsters, which details what we face and how a positive mindset and a good support team go a long way to conquering the bad guys. Art is a great way to get our message out there. Draw, paint, write, sing, dance, whatever. Just get those creative juices flowing. Before you know it, you'll give birth to something uniquely you. With that, you'll find that giving life gives life meaning. Really.

19. All of this collective Parkinson's and related conditions crap we're going through has to be for something. If it isn't, it's all just a slow motion torture film. I don't want to think of my life in that way, so if I can share my story or encouragement with anyone, I'm going to do it. Even if I only affect one person, it's still one person who can change his or her life and the life of others. Positivity: pass it on.

20. I saw this sticker on a car. Yes, it's for autism, but it says a lot about lacking empathy and not understanding people, as well as what picture we need to paint to make up for it. It also shows love because we care about the well-being of those we love. It's not easy to "get" other people. We're challenging. We have baggage. You can't delete us if you don't like us. You have to communicate face to face with us. It's harder when our problems come with something we can't control and that hurts / irritates you. Yes, some things are harder to face than others, but by learning about other people, not just looking at our own little stable of perfect / wonderful contacts, we see that there is more than 1 way to do things. I'm working on this.

21. Heroes are a good thing. Take this story, for instance. Somewhere in the middle of a whole debate about who should endorse athletic wear, someone got lost. That man's name is Shaquem Griffin. Nike signed this man to endorse what's possible when a man with one arm wants to play pro football. Yes, he's having growing pains and isn't currently starting, but he needed to ramp his game up at every level. After being told he was "too heavy" to play in a football game as a kid, his coach challenged the other coach whose real reason to keep Griffin off the field was that he felt that only people with 2 hands should play football. Shaquem's response at that young age was to feel like that coach saw him:

“Like I was defective or something. Like I didn’t belong. And that was the moment I realized I was always going to have to prove people wrong.”

However, now he puts it more directly and empowering as he says:

“I feel like all the boys and girls out there with birth defects — we have our own little nation, and we’ve got to support each other.”

It makes me want to watch the Seahawks, and I don't even like football!

22. Now that I'm back on the Amantadine, my tremors are improving. I'm also dreaming more. They're doing that Eternal Sunshine of the Spotless Mind thing. As long as I don't go back to fighting to escape the Holocaust, I'm good. No sign of livedo reticularis or itchiness at this point. Oh, and the Himalayan salt lamp helps a lot.

23. If it's fall, then I need to be getting some nature therapy hiking between the trees! You should, too. Remember National Parks passes are free to people with permanent disabilities.

24. While my official diagnosis day is November 1, 2016, I knew as soon as my doc called it on September 27, 2016. November 1st was anticlimactic. It's just the day I started blogging. Most of my everyday life friends knew by then, too, since we spoke. The tests were just about having an official diagnosis to be 100% certain about it (well, non-autopsy certain). From that day, being out has led me to write for you, the Parkinson's community, the world as a whole, my family, and myself. It's an honor to be able to have posts that have been read 2-3000 times (if not more - in one case, almost 6,000 - 25 THINGS I HAVE LEARNED ABOUT PARKINSON'S SINCE I WAS DIAGNOSED). Having taught English until last May, blogging allows me to do what I love (writing, researching, explaining, and encouraging people to rewire themselves into the best possible person that they can be). It's an honor to do that for you today. Thanks for sticking with my post!

If you want to read my HEALTH UNION POSTS, CLICK HERE.

25. Recommended reading:

When Bad Things Happen to Good People - Harold Kushner
Man's Search for Meaning - Victor Frankl
Deep Survival - Laurence Gonzales
Surviving Survival - Laurence Gonzales
Between a Rock and a Hard Place - Aron Ralston
Did I Ever Tell You How Lucky You Are - Dr. Seuss
Lucky Man - Michael J. Fox
In Love and War - Admiral James Stockdale

Sleep: The Good, The Scary, and The Future as Well as Some Thankful Expressions

Recently, my friend John who works at the Salt Lounge in Wyomissing, Pennsylvania, invited me to experience salt therapy at his place of work.

I must say, it put me to sleep. Literally. I was awake for 15 minutes, and I fell asleep.

That's not a bad or uncommon thing. In fact, the staff warns you that it could happen because the therapy WILL relax you and make you breathe easier. Put simply, it was the bomb diggity. Right now, the goal is to take my wife back for our anniversary in August and do massages and salt therapy.

To set the stage, when you walk into the room, you are mandated to take off your socks and shoes as you walk across a floor of pink Himalayan sea salt. Apparently, people don't want to walk barefoot through your gunk, so please oblige.

All around you is additional pink sea salt, which is pumping into the room. You are given a Walkman with various trance style music to listen to, and the lights are dimmed to reveal white specks like stars, which appear as glowing lights. These flicker on and off as the spacey music fills your brain.

So there I was, sitting on an Adirondack chair, letting my thoughts vanish, and drifting into no thoughts. WHAM! I was woken up a half hour later to hear that it was over.

What? It's over!

If I were to do it again, I would have The Orb's "Little Fluffy Clouds" on. I think that would express everything I wanted to feel in the moment.

Anyway, I've had good luck with salt therapy in the past, so convincing me to go was no big deal. My wife's sister had one of those salt lamps, and I slept really well with it when we were in Georgia. This was prior to my sleep aepnea diagnosis (though I knew I had it). Right now, I don't sleep well at all, so for someone with sleeping / breathing issues, the salt is a good thing.  Now, we've got 3 set up in the house. Two were gifts from her, and one we had, but it was in the attic.

As for my post-salt therapy sleep experience, keep in mind, I went home that evening and laid down on my couch, drifting off to sleep. I woke up 12 hours later to a phone call that I was late for hiking. I didn't wake up to go to the bathroom prior to that either, which is unheard of! Also keep in mind, 12 hours of sleep is 2 nights in my world of insane sleep (more about that later).

Obviously, you good people are spread out, but if you're near Reading, Pennsylvania, you should swing on by. There's lots of other things to see and do in Wyomissing. After all, it's where Taylor Swift lived before moving to Nashville, and yes, they claim her pretty hard around here! Other than that, you're about 30 minutes from Amish Country, too.

I recommend Shady Maple Smorgasbord! It's pricey, but it's better buffet food with more quality choices. You'll feel the bloat, but it's worth it! Taylor Swift might not be able to eat in there now without being mobbed, but you might see Raymond the Amish Comic!

+++

But anyway, when it comes to sleep, I have been having issues lately. In the last 3 weeks, I have had many aggressive dreams, which is weird because I'm actually feeling pretty mellow, and in the worst of the dreams, I was falling asleep to Parks and Rec.

1) Someone is saying horrible things about Parkinson's people, so I stand up for all of us. Mind you, I am at the house my family lived at from age 16 to 29. I feel that I have nothing to lose, so I talk said person down only to confront another person who feels like he needs to keep the aggression flowing.

2) A dream where 2 former bosses melt into one another, and I have to confront them over lies they are saying. One of them is from nearly a decade and a half ago. Somehow, this dream drifts into going back to Basic Training. A lot of my dreams do. I tend to find myself in a more comfortable and capable way while there than I did in real life (yes, I get the symbolism of that). I have been back to Basic Training with my wife Heather, myself, and my former unit, some 30 years later. They're not bad dreams, but I always dread doing things like 6 inch square folding and locker inspection preparedness. I'm more exact about things like writing, but things that can just be... they tend to be.

3) I have had 2 punching dreams that I remember. In the second dream, I'm not sure why I punched, but I know I swung at the headboard. In the first dream, my wife and I were in a store, where we encountered the owner having to fight back against a rambunctious crowd of post-teens. As he defended himself, one of the thug kids asked if we wanted to help get him. I refused, and soon we were fighting off the thugs. I know I swung at least twice. Despite having no control over my out of sleep actions (a part of REM SBD, which keeps the body from being shut off), I am hyper-aware of them. In the past, this has allowed me to fly or choose direction. I can also talk to myself in my dreams. Let's just say, it's a wild ride in there. As this dream continued, I found that we were having to fashion spears to go on the attack. When it was over, it turned out that it was some kind of a game (I assume somewhere between a club and the Hunger Games), and because of that, they were gearing up for a second round.

4) I had another dream where 2 people I know were present. The wife was being condescending and hateful toward the husband, and I remember shoving her for this. As that occurred, the husband announced that the wife was cheating on him, so it was a case of me defending his honor in somewhat the way I did the people with Parkinson's in #1. After that, I remember him resolving their situation to find his independence.

5) In another dream, I met John McCain during a session of Basic Training. I remember that he was feeling that some of my observations about him were wrong, which bothered me because he's my current favorite living leader.

6) Additionally, while falling asleep, I might wake up and feel my body snapping here and there.

+++

Recently, I had another sleep study to figure out why I'm ripping my sleep apnea mask off every night. I wear it, and it doesn't feel uncomfortable. I manage to fall asleep, but in times that range from less than an hour to less than 4 hours, off it comes. I have NO KNOWLEDGE that this has happened (except in 1 case). If I sleep on my back, I fare better, but that's not perfect since I'm a side sleeper. Hence, my pulmonary doctor sent me back for more tests because she's still trying to be sure about asthma and aspiration pneumonia. I've written about THIS in the past.

I've also written about sleep apnea before. Here is part 1 and part 2.

Personally, I'm more sold on REM Sleep Behavior Disorder and Parkinson's breathing issues.

This is my first pneumonia account. This is the second.

Anyway, all 3 times, I went here (though to 2 different centers, but the same attendant Michelle). I sent this to her boss.

I am writing this letter to commend your employee, Michelle.

Over the past few months, I have been to 2 different Lancaster County sleep centers over 3 visits. Each time, I had the pleasure of being treated by Michelle. Her manner has always been upbeat and she shines with dedication to her profession.

While much of her job that that patients see deals with getting them ready for the study by “wiring them up,” she does her best to cut down on the awkwardness and potential discomfort of the on and off sticky substances. Here, she even made the “goopy” part of the experience as pleasant as can be (the same was true for the reverse part of the procedure).

Additionally, she worked hard to explain everything that was about to be done and that was done. She did while all the while answering all of my questions. While this is “part of the job,” I have an excessive amount of questions due to the fact that I have Parkinson’s disease, which is a condition that I write about for myself and Health Union.

Here, I am able to take my former life as a teacher and combine it with my current life as an educator / advocate and combine them in a written form so that other people and I will be able to understand the process. Knowing that I have a solid professional voice guiding me to answers while helping to alleviate concerns makes me confident of who she is as a professional. Also, with her help, I am able to assist others in coming to accept help with sleep apnea. To me, this is what life is all about.

Please know how appreciated your staff member is (she’s not just helping me – her care is making a difference world-wide. Here, I can say this simply: I would recommend your practice to anyone for the value she brings to it.

I really like writing letters like this, but I also like being able to be a part of the research in a hermeneutic phenomenology kind of way. While that's a big way of saying a researcher aims to find cold hard "objective" data in how people "subjectively" describe their own participation in an action. For instance, I tell you in paragraph form how it feels to get a treatment. 

Here, my writer's side allows me to express what I'm going through in enough words to really make something of it.

On that note, I hate questions like "How much pain are you in?"

What's  a 0? A perfect Sandals vacation?

What's a 10? An 8-year stint at the Hanoi Hilton?

So where is my aspiration pneumonia in all of that? Is a 4 a fair estimate? If I said 8, is this just a weak pain tolerance?

How about I just describe it to you?

Working with Michele is easy because she's into the dream aspect of the job, and was able to talk about future research with that as well as what's going on. 

For instance, I could ask her things like, "Did you catch that dream in the second half?" She would tell me she did, and she could describe some of my actions like how I moved my feet (part of my REM SBD). Unfortunately, she can't TIVO the dream for me... yet.

While there, I didn't rip the mask off, and I slept easily (as I did the other times). I had really wanted to work with the doctors to watch me do this while they explain it to me, but yeah... maybe I'll just have to set it up in my bedroom. Then again, do I really want to? I might reveal ghosts (!?!?!?!?!).

Somewhere in all of this, I find myself working to help myself, but I also find myself frustrated with the endless search for problems to label. I feel like the astronauts in Tom Hanks' Apollo 13 when they just get frustrated with being trapped in space and doubtful of their return, so they rebel against being monitored by Houston by pulling off their sensors.

Nobody will know my kidney functions now!

Of course, just like with Jim Lovell's crew, there comes a time when we need to be left to do this, and there's a time to just shut up and listen because this effort for Sisyphus might be heroic.

I'm not sure of where I am with regard to the treatment. I believe it could help, but unless I stay at the sleep center (my wife would have a problem with that) or we fastened the mask to my head with metal clasps, I'm just not sure.

Additionally, I'm done adding medicines for a while. I sleep alone, so I'm not a danger to other people, and besides, not all meds are good for me. My doc referred to my body as "too sensitive." Here, I have little interest in yet another brain medicine when I have 3 already.

In the meantime, I'll strap on my mask tonight and hope for the best.

(Also, see THIS POST for more about my sleep issues regarding some of the reasons I sleep alone as well as other issues that Parkies face in the bedroom).