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

PART 2 - Disabled vs. Disability vs. Differently Abled vs. Add Your Name Here.

Part 2 of THIS post.

In the late 1970s and early 1980s, there was a television show called Fantasy Island. The premise was you could wish to be something / somewhere, and you would get it for a time. Of course, people got into a lot of trouble when they were looking for their dreams in all the wrong places. Because of that, they would need Mr. Rourke (left) and Tattoo (right) to bail them out. In the end, they learned something today and they were rescued from doom.

In 2018, I think a lot of people with disabilities would like to give people who aren't living with disability the option to walk a mile in their shoes so they would feel more empathetic for their plight. Nobody is so mean as to wish something like Parkinson's on someone else (at least I hope not), but it would definitely be interesting to see how so many trolls, haters, and insensitive types / people who just don't get it would cope with living a QUOTE UNQUOTE NORMAL LIFE and then one day get diagnosed with a PROGRESSIVELY-DEGENERATIVE, INCURABLE NEUROLOGICAL DISORDER.

Here, they could deal with the Avalanche Day diagnosis, deal with invisible symptoms people can't see, wrestle with medicinal side effects that kick like a bull with a bad attitude, and learn how it affects family, all while trying to retain dignity of self and ability as they fight with mental health issues caused by physical issues.

At the end, they would wake up from the dream and be OK, but like Scrooge, they would learn a lesson. They would save themselves and find out none of it was real. It was just a bad dream, much like the sleep anxiety many Parkies deal with. They simply wouldn't say or do mean things to hurt other people who live lives they don't get.

Isn't community and tolerance the point of life as a people (unless you're completely self-sufficient in Alaska)?

At one in-service I went to in my early days of teaching, we played a game where we had to navigate a maze while looking in a mirror. I used that with my own students. They saw the challenge as frustrating, but enjoyable. In the real world, sometimes that's all it takes... that is, unless trolls just want the right to hate on people.

Who plays games? Who has fun?

With the concept of teaching haters what's up, I'm not asking that it be like the South Park episode where Cartman is taught a lesson about picking on kids with red hair, but yeah... a start would be nice (besides, Cartman is incapable of being taught a lesson).

For some people, this would work. For other people, it would create paranoia that someone like Jane Elliot would dare make kids (or adults) walk a mile in someone else's shoes to understand the discrimination at the heart of Martin Luther King Jr's assassination in 1968 (especially when she won't go away and then "right-minded" people have to vilify her year after year to make her go away). Of course, Elliot worked her stuff in the moment of this horrific killing, teaching young rural white children while doing her exercise without prior parental knowledge of the planned lesson, at least the first time. That said, she showed how the subjects were quickly caught up in discrimination that they didn't know they could feel. When it comes to being caught up in the tide of sanctioned dislike, how different is this from Stanford Prison or Milgram's "electricity" experiment?

In a world where adults didn't grow out of their lost ways, they seem to be given a pass on acting horrible to others. Welcome to the year without a happy song of the summer.

Dude, what's up with that?

Back to the main point: happiness / fun / purring like a kitten. It's good for all of us.

As for Elliot, eventually, her story ended up on Johnnie Carson.

Hundreds of viewers wrote letters saying Elliott’s work appalled them. “How dare you try this cruel experiment out on white children,” one said. “Black children grow up accustomed to such behavior, but white children, there’s no way they could possibly understand it. It’s cruel to white children and will cause them great psychological damage.”

Elliott replied, “Why are we so worried about the fragile egos of white children who experience a couple of hours of made-up racism one day when blacks experience real racism every day of their lives?”

The biggest talk show in the land made the exercise national. People saw the power of empathy and understanding. Other people chose to see it as white guilt corrupting their kids.

Unfortunately, we still live in this world today. Why force anyone to think about how it feels to be anything other than what they are unless it's a quick path to Lifestyles of the Rich and Famous? It's all just liberal, snowflake claptrap designed to make our country not great.

When I taught, I would discuss People First Language and bias speech since these are important things for college and the real world. In the real world, you know, you can't be Alex Jones.

We would look at words like the name of Washington's football team and examine how "redskin" has a different meaning than skin color... i.e. scalped heads. We would look at how "hysteria" was a female slander since it came from "wandering uterus." By this antiquated outlook, most women's problems could be blamed on it (in another way Andrew Dice Clay could be blamed for many problems in males back in my formative years). I'm not sure what Def Leppard was thinking when they named an album this, but yeah... maybe I do.

When I wrote the first part of this essay on August 28, I wanted to reflect how on September 26, 2017, I had no diagnosis. Then, on September 27, 2017, I had 90% odds of a diagnosis. The next day, on September 28, 2017, I had made up my mind to accept my diagnosis, if that be what came. What other choice did I have? Finally, on November 1, 2017, I had an all-but official diagnosis. Of course, the official diagnosis comes with the autopsy. Right now, I need my brain.

My essay then dealt with how I try to remain as much of the old me as I can. Additionally, I celebrated other people who live life full on in spite of their life not being what they might want it to be. The point was how to look at people who have a disability. Does their physical / mental success somehow keep them from being seen as "disabled?" The point wasn't to say that they aren't since disability effects and conditions come in all shapes and sizes, but rather to address a conversation that I had with my wife regarding my hiking in rocky areas as something that might make some people believe I'm not really affected by Parkinson's (when I am actually affected in many ways).

In a world with so many able-bodied handicapped parking spot police, it was a serious question.

I'm still not sure of the answer.

Dealing with disability is like dealing with death. It's a 5 stage process. Denial, Anger, Bargaining, Depression, and Acceptance are the levels. When we get diagnosed, the process begins. As we get worse, it continues.

I've never denied or pretended I didn't have Parkinson's. What's the point? I've never bargained for more time. Besides, God doesn't answer those questions (see HERE for a great way to look at the bad things that happen to good people). Sure, I've been mad, sad, and "just OK." Most days, I'm Dan unless a symptom affects me or someone I love. Then, I have to find solid ground and / or offer comfort to those who notice the difference.

That sucks.

For the most part, I choose to be me. I'm not letting Parkinson's take that away. It's got enough things from me and those closest to me already.

In the first part of this story, yesterday, I talked about the first and only time I had a handicapped placard. I was at Yosemite, and I felt like people were looking at me as not being "disabled" enough to use the spot (in their eyes). In the original article, I reflected how it affected me seeing myself as a person first. I never used it again since I felt very uncomfortable using it - especially with a relatively active lifestyle in spite of Parkinson's (though I have some mild dystonia issues in my left foot that make walking without a boot uncomfortable - it actually hurts more to walk across a parking lot in work shoes than across rocks in boots).

IMPORTANT NOTE: I'm not here to tell you how to feel, but rather, I'm here to share my story. My goal is to inspire others. If I can do that for them, then they can inspire others. I have the audacity to believe we should ALL be applauded for ALL of our victories, no matter how big, small, or fleeting. We need to see the good in life, not just embrace the problems of the world (though we need to create positive change where possible). We need to help our fellow community members to not get lost in the swamp of their conditions.

Yesterday, someone out there on the Internet in a hiking group, in reading my title and not the article, informed me that I needed to "leave the English language alone" since I am "disabled." Apparently, with 4 answers on a multiple choice test, he knew the right one, and that was that.

Somehow, I was glad that he wasn't making the choices for me.

That said, in looking at the other choices, he must not have realized that "differently abled" isn't politically correct speech (though there are a lot of back and forths on other "PC" terms in between society's communities that exist with people with and without disabilities). Well, some people who created "differently abled" may want it to be PC, and some people who hate it may want it to be all they hate about PC, but the reality is that some disabilities / injuries can produce different abilities. Really. For instance, the savant condition in Rainman is not fiction. Also, neurodiversity, in some conditions, is more than just "I'm OK with my condition. I think I'll keep it." Some conditions create abilities that wouldn't exist otherwise. Other conditions take them away. Some people have benefited from their conditions. See this LINK for examples.

For me, I learned a lot of things about how to be a better me because I was forced to confront what Parkinson's meant to the rest of my life and my family's life. I wouldn't change that at all. However, I'll give the permanent part of the condition back right now if you want it!

That said, I'm not perfect at this game. For instance, it's not always easy to be able to do something and not know why other people can't do it as well. For example, some people have trouble with "your" and "you're." Some people don't care if they get the difference right, but some people can't get it or numbers no matter how hard they try. Here, I, myself, am working on not editing people's stuff when I read it in passing. Better to see people for the positive than to dwell on the negative.

Beside, I'm not getting paid to edit Facebook posts.

The point here is that tone is everything.

Being CORRECTLY and KINDLY told that handicapped spots are a privilege for those who can't walk far is fine. I have no issue with this sentiment, and it's why I don't have a license plate, nor am I looking to get one. When the time comes, I will. I'll make peace with no car keys, too. Life is too short to dwell on what was. I'd rather focus on what is. Besides, when the time comes, it's about utilitarian safety - not Dan's benefits.

Besides, at this point in my game, my life is only being SLOWED down... not HALTED or INHIBITED. I get that, and I respect that advice.

Positive advice makes a difference. It may not be what we want to hear, but it's what we need to know.

Here, I also refuse to Harrison Bergeron myself. You shouldn't either. Live life on your terms, no matter what you've been handed. Never make yourself less to make someone else feel comfortable. A lot of people choose to dwell in the dark worlds of being wired for pessimism. The key is to find our own meaning and optimism.

However, getting schooled with lots of F bombs and phrasing to tell me how to make my situation great again isn't going anywhere... unless this angry person wants to contact the disability office and speed up every single disability claim out there since he's obviously an expert in the matter with his one-size fits all definition of having any old disability equals permanently and completely disabled.

By the way, getting disability payments isn't an easy procedure or a short procedure (almost 2 years on average - though vets move quicker).

But alas, we live in a world that features a loud group of people that wants to protect the English language and society with quick easy definitions to make people like them comfortable. Why should people with these conditions have a say in the matter as to how they want to be identified (provided they don't create secret codes in their own "officially-endorsed" language to return the hate with hate)?

Never mind that I and many others are able to do many things (though not all of the things we once did, let alone do as well)... hence our coping skill, which is "Think Able" and living life as well as we can despite having a condition (I have Parkinson's, but it doesn't have me).

Never mind that it's scary to lose our identity and independence when the poop of a diagnosis hits the fan and conditions and adversity befalls us... especially big, frightening get worse conditions that present even bigger challenges.

Never mind that just not caring what others think while we accept our place on the Group W Bench (which must be where the "disabled" people go in the minds of those PC hating populist types who seem to dream of better days when they could use hateful slurs and support lost causes almost 50 years after they were officially dealt with, while sneering through self-promoting tales of racial violence) is easy to say when you've never experienced the feelings of these conditions.

Never mind that asking to be respected or listened to isn't a big thing, especially when we want to be part of things - versus how some people truly think that those of us with disabilities are just conspiring to raise their taxes to live on disability payments while making their life un-"great."

That said, the point of all of this is that adjusting to disability isn't easy. Being active with disability isn't easy. However, tolerating one another and walking a mile in someone else's shoes is. You simply have to be open-minded enough to try.

It doesn't matter what disability we have or how far we're into the process, we and all those who live in this world are on the same team. Let's be excellent to one another.

PART 1: Disabled vs. Disability vs. Differently Abled vs. (add your name here)

Part 2 of this is HERE.

Earlier this year, my wife and I went to Yosemite. Since I have a National Parks Pass for people with disabilities (THEY'RE FREE IF YOU KNOW ANYONE WITH A PERMANENT DISABILITY - NOT JUST A BROKEN LEG FOR THE TIME BEING), they gave me a tag for my car. This was so we could park in the designated handicap spots.

ALL OF OUR YOSEMITE PICTURES ARE HERE

In my article for Health Union (see here for many other conditions and stories of those who live through them - they're much more than just Parkinson's), I wrote:

Sure, I hike with a limp, but I can walk. Now, I had access to special parking spots. Does this mean I’m at a new level? Does Parkinson’s have me (like the pod people in Invasion of the Body Snatchers)? As a person who found his health condition at the mid-life mark, I now face this confrontation.

Let’s just say the access pass wasn’t the bonanza of front row parking that some people might think it is. Instead, I had a mental hurdle to cross. The placard might as well have said, “You’re less Dan now. Ready for the confidence shake?”

As my wife and I walked through the lot, I wondered if people were looking for a visual disability. After all, most of mine are invisible, save the tremors and the rigidity. I thought about how people judge active people with disabilities they can’t see.

NOTE - I used the permit once, and never used it again. As stated by a commenter, it's something to forgo since I could walk, AND it's something I don't need, which is why my car doesn't have a disability plate.

You can read the WHOLE ARTICLE if you choose, but the point is

WHAT AM I IN THE EYES OF MEDICAL SCIENCE, THE LAW, AND MY OWN ABILITIES? WHAT AM I IN THE EYES OF MY NEIGHBORS AND FELLOW PEOPLE? WHAT AM I IN THE EYES OF ME?

The CDC defines disability HERE.

These include conditions related to impairment, activity limitation, and participation restriction.

That seems pretty straight forward, but what if you can't see my disability and I'm active or at least taking pictures of me on the day when I told my nap I wasn't going to take it? Granted, I have a tire around the middle, but what if you think that because I hike in rocky places (when you wouldn't), I don't have disability "issues" and "concerns?"

What if you think I am just peachy because I can still do that when I'm no longer wanting to do solo 30 foot rock climbs like this  (at Hawk Mountain) or waterfall climbs up the falls like this (at Sullivan Run) and this, its frozen cousin at Ricketts Glen (and that isn't a fun thought, by the way).

All you know about my internal body heat getting out of control is that I must be the smelly kid if I look like this after 20ish miles on the Standing Stone Trail in 2013. You don't realize that I am on my way to looking like that in short order on a walk that's about 4 blocks long in my neighborhood yesterday (seeing as it was 90°+).

You see me as able to walk, type, talk, see, laugh, and play. You don't always catch my robotic voice, my non-smile, my inability to hear soft, high-pitched voices, my lack of smell, or my unblinking eyes and associate them with other things SLOWING down, too (although they do).

So let me ask you this, as I did my wife the other day when we were talking about the long disability process (partial / full / future / changes / etc.) and how I discuss being relatively "active" when I speak to people concerning it. 

Here I should emphatically state the boulder climb was last year, the frozen waterfall was 2015, and the running water climb was 2014. Also, keep in mind, my diagnosis was September 27, 2016. I still go out to places like the Throne Room (hiking through rock fields to stunning vistas) because I want to enjoy life. Why shouldn't I? Would it make people happier to know that by being diagnosed with Parkinson's that I am truly unable to do things. I mean, I could never dunk a basketball, let along fake out Lebron to dunk on him, but why can't there still be things I can do when there are other things I can't do / never will be able to do?

Thus, here is question # 1. What if Jimmy Choi is an American Ninja Warrior supreme? Does that mean that he's not someone with a disability?

There's a lot of famous people with Parkinson's. 

There's a lot of famous people with disabilities.

They do what it is they do and want to do and need to do. Does that mean that their conditions don't create other new normals for them?

There are a lot of athletes with disabilities. These include Jim Abbott, who has 1 arm and an MLB level no hitter to his name. His story was featured on Comedy Central's Drunk History.

Seeing as I'm a baseball guy, I'm a little more familiar with people like this (Lou Gehrig, MLB Hall of Famer, you rocked! See my story on his first season playing with ALS (which is the best baseball season ever!!!).

So yeah, here's Pete Gray who was the last pro hitter with one arm.

Here's a great story about one-armed baseball players including a lot of kids who do despite what other kids and adults make them feel that they can't do.

Adam Bender is a tough as nails kid. Despite having one leg, his life has been about giving it his all. Even when he was profiled during his elementary school days, he was still Navy SEAL tough.

Here's another list of people with disabilities who were / are successful in spite of them.

Nevertheless, in a world where the wheelchair is the symbol that many people think of regarding disabilities, what about invisible disabilities? For me, this is everything that bradykinesia does to slow people, like me, with Parkinson's down. This is also exhaustion, mental overload, medication side effects, and cognitive issues. For a friend of mine with ulcerative colitis, this is the need to always be around a bathroom and lots of exhaustion. For many of us with disabilities, apathy and depression are the permanent unwanted guest. For as good as we might look, we have our issues.

Just because you see us having a good time doesn't mean we're any less "diagnosed."

Additionally, my boots keep my claw toes in check, but without them, it hurts to walk distances. This is why I don't wear sneakers. Nevertheless, with boots AND poles, I can balance on rocks. Yes, I'm actually more comfortable walking a rock field in boots than from my car to my job.

But even when we're still ourselves (in my case Dan), we're still battling our conditions to stay us. 

"Sometimes you win. Sometimes you lose. Sometimes it rains (Bull Durham)." 

The point is that there are outliers who run marathons and kick butt. Sure, we can be the outliers. Most likely, we will do our thing and just be. However, we'll always have the monkey on our back to fight with. On those days, we'll get our GRRR on.

Whether you see it or not. 

So in the end, I'm Dan, but I'm Dan with an evil sidekick who constantly taunts me.

For that, I have a condition that always affects me. It may not be the condition someone else thinks of being "truly" disabled. It may have come on later than another condition. Nevertheless, it's something that affects me now, and it will affect me more later.

Whether other people understand that or not, it's true. That said, whether I think I always can let me be a person first, I need to keep being Dan, regardless.

Letting Parkinson's have me is letting me turn into a pod person, and that's not happening... no matter what symptom I'm stuck with.

In a world filled with so many wonderful things to see and do (this is the Faroe Islands), anything less would be anathema, especially when I control the equation.