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Thursday, September 27, 2018

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

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