10 Things I've Learned from Parkinson's.

My friend Pete challenged me to write about neurodiversity. As someone who believes in me and my writing cause, I wasn't quite sure how to approach the topic my friend suggested (since I have a neuro condition, but not the above conditions), but I really wanted to do the topic justice.

His challenge dealt with this in the workplace, as well, but that was an issue I could only speak of from my experience, and that comes back to say, "People deserve the right to work as long as they physically and mentally can AND aren't a danger to the living and dead." Here, I think about how long my limits can and should be, versus my desire to stay productive and contributing to my home.

As that's not easy for me, it's even more difficult for me to reflect that on the state of others with conditions I don't have experience with.

Today, I bring that to you with the idea that I would introduce the topic and tell about how I feel it as a Parkie so that you can ponder it for yourself..

Neurodiversity is (according to John Elder Robison who believes in and advocates this cause personally and professionally):

"the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome.  This represents new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science.  That science suggests conditions like autism have a stable prevalence in human society as far back as we can measure.  We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not the result of disease or injury."

What this means to those people who have these conditions (Asperger's being one of the big ones people talk about) is to be cured or not be cured. When that is considered, the question inherently becomes, "Am I a smarter / better / more capable / me because of it?"

In a world of angry for and against opinions (think abortion, death penalty, Trump, etc. where all opinions are passionate and partisan), I'd like to get into putting my stamp on a definitive opinion to that like I'd like to do any of the following:

1) Binge watch Sex and the City, the show and movies

2) Attend a Justin Bieber concert, complete with backstage passes

3) Be forced to binge read every article about Trump or Roseanne, which has been published this week (one article is bad enough ... at this point of media deluge, even people who cared or write these articles must be tired of looking at them). NOTE - I'm not a fan of either, but that said, isn't there anything else to talk about?

4) Reenact Andy Dusfresne's escape from Shawshank Prison and not be allowed to shower until the next day.

5) Be forced to live on a diet of only cauliflower, broccoli, Brussel sprouts, and salad.

6) Hang out with the Real Housewives of anywhere for a weekend (this includes any of the Vanderpumps or the Southern Charmers; it goes double for Lisa Rinna).

7) Work 1 more day at a telephone call center (I worked at one center for 2 days). Let's just say, some people can do it, but the phone and I arena't besties.

8) Get a NY logo tattooed to my arm in a visible place to show support of the Yankees

9) Swim with the sharks while re-enacting the end of the Indianapolis after I was smeared with blood. 

10) Be the guy who announces that Thanksgiving / Black Friday shopping has been delayed at a huge Walmart.

I think it's fair to say that we all want to be inclusive and empathetic, but the individual answer is difficult in every personal case, let alone to place on anyone else. So Bill James style, I ask the following to get you considering your feelings about your life situation:

1) if I have a condition, can I be made better to be cured from it?

2) am I happy the way that I am or do I really need to be better so that I can be happy?

3) is not having this condition going to put me in a better place?

4) how has this condition shaped my personality?

5) what would I sacrifice / gain in my life if I chose to not be this way?

6) what are the risks of getting this done? Are the risks worth the rewards?

7) Is there something I want to be that requires removing certain risk of said condition?

FOR ME, I want to explain this from the perspective of my own neurological condition - Parkinson's, which is a huge part of my life. It's like a conjoined twin, but instead of being in simpatico, we hate each other's guts. Like two kids in the backseat, we annoy one another. However, instead of poking one another, we whack on one another in ways that cause a more definite pain.

So the question becomes, if a doctor came to me with a miracle cure that was tested and for "realsies" (not the miracle cure tourism that attracts too many people with untested promises), would I want to do it (if I had the money available) or do I feel that there is a place in the world for me that only this neurologically-affected version of me can achieve?

1) I don't regret having contracted it... at all. It's taught me a lot about myself. It's made me A) humble, B) empathetic, C) committed to a cure, D) committed to educating about it, E) mature. From what we do in our daily relations to realizing that thinking things like "I'm not like those people" isn't right to say or think because we are / will be going through the same process, we all learn a lot. I know I have. I've seen the change in me, I've feared the future, I'm standing up for myself, I'm being encouraging of others, and yeah... I may not always be PC, but I am working on empathy / kindness / karma as much as I can. If nothing else, I'm trying to avoid negatives (like too much nonsense news - even if I am currently viewing Baywatch (not a total waste of time, but unnecessarily rated R).

2) I do regret that it's made my family and friends sad. Nothing can give back for all of the nastiness and tears, but a check from Ed McMahon would be acceptable for starters. For this, I'd like to see Dwayne "the Rock" Johnson Rock Bottom Parkinson's into submission.

3) I don't spend ANY time thinking about going back in time to stop how I contracted it. Time travel doesn't exist, and if it did, I'd rather avoid dumb mistakes that do more to hinder my life and hurt other people than what PD has done to me (really). On a good note, I'd also rather go back in time and see the Rolling Stones on the Exile on Mainstreet tour (their best album and the height of their sound). I'd rather meet / see authors / philosophers / musicians / sports stars /people who influenced me, but since they died before I had a chance to know them, I never did. I say this in all seriousness. Without contracting PD, I'm still a flat character with all too much negativity in my attitude. While PD sucks, I was on a negative slope before that. Now, I'd like to think my life has more potential, even if it comes with a lot of shaking and bridge out signs.

Additionally, time travel would let me find out what happened at Roswell, Kecksburg, and Woodbridge. I really want to know if aliens are real, you know? Seriously. It might sound funny to say, but that would be higher up on my list of what to go back for (then again, I see my PD as inherited through heredity, so what can stop that other than not being born?).

4) Would I like to have my hearing, sense of smell,  blinking eyes, smiles, elasticity, calm hands, a pain-free left foot, lack of gaps in thought, freedom from meds that have side effects I don't like, the freedom from values choices of what I can give up to keep pace, not having to make peace with losing lots of important things, and not worry about financial / death concerns over hospital visits for nasty stuff, let alone all of those weird sleeping / dreaming issues? You betcha!

5) The right to never make a decision if I'll have my brain operated on while I'm awake.

6) The fact that I never would have met and inspired / been inspired by such great people.

7) The fact I'm racing against time to complete a bucket list that requires working, money, time off, ability, and endurance. Wouldn't it be nice to have some wiggle room here?

8) The combined feeling that women somewhere are saying, "Damn! I dodged that bullet not being a caretaker for you and your PD affected sorry self" / the feeling that I'm thinking, "I'm glad I never counted on you for commitment of love forever, since you'd fail tremendously at being my caregiver, let alone empathetic partner in life." (Note, this is not a part of every relationship / dating / crush I've been on at least 1 side of, but it does reflect many non-relationships I didn't make real).

Not every person / partner / caregiver can handle this commitment of "in sickness and in health," and in many ways, we are lucky when we have the right ones.

One of the worst parts of PD for anyone is how it slaughters relationships for some people.

Sad-faced emoji crowd of faces equivalent to that of a college football game.

It sucks to lose the wrong ones because there was "love" there (something that's easier in able-bodied times), but hopefully, in our time with PD, we find people and appreciation in our new normal with better people. We get rid of the people who don't stick around to take their crap out on us while moving away from the relationship or looking for some grand insurance payoff.

Nevertheless, is saving a relationship worth being cured of anything, especially if it takes away a part of our identity?

Who am I to say.

9) The fact that my wife stands strong for me (as does my family and friends), and whether she ever thought about it, this disease has given her (and my family) a new level of strength.

10) Not wondering if every person who comes into my day to day world is thinking I'm a lesser person for my 1) lack of melody in my voice, 2) unblinking eyes, 3) inability to clearly hear higher voices spoken with low volume (ESL speakers are a major problem that causes me to wonder if people will think I'm a racist - HINT! I'm not), my rigid movement, and sometimes (though not always) my tremors. Let's just say, dropping the disclaimer of, "Hi! I'm Dan, and I've got Parkinson's... that can go out with the trash.

Yes, like Black Jack Mulligan, I wield the Claw (only mine is dystonia)!

SO TO ANSWER YOUR QUESTION - now that it changed me in so many positive ways, would I still wave goodbye to Parkinson's and put it on a moving truck as soon as tomorrow morning 8AM?

HMMM...

I would run with my progress, but I would live stronger and truer because of said changes by kicking PD to the curb (like Hillary should have done to Bill).

What do I think you should do?

The Phillies are really doing well this year.

20 Thoughts for / about Those Who Care for Parkies!

This is day 4 of my 21 straight days of posting to promote my blog (my dream of writing for more than just a hobby). During this time, I will be covering lots of other Parkinson's issues in my posts every day, so be sure to check back again at my Facebook page or this page soon (and see my greatest hits on the wall to the right)! In this time, Parkinson's topics to be covered are paralysis agitans + my great grandfather, sleeping studies + sleep apnea, dysphagia, physical therapy, my first emotional overload in Mexico, disabled not disabled, the Universal Parkinson's Disease Rating Scale, responsibility of self to give up dangerous pursuits, National Parks passes for people with permanent disabilities, Kevin Hart + the joys / woes of people taking in our art, and hiking with Parkinson's stories, as well as other things that I do to stay me (baseball, music, writing, and other hobbies, as well as a few older stories that are going to end up in my Parkinson's book).

So... without further hesitation, here are my feelings on caregivers (significant others, family, friends, coworkers, passers by, and health professionals).

1. There are no rules on how to divide grief and suffering unequally in a family because we all get this crap sandwich equally. I may have Parkinson's and all its pains, but I don't get a front row seat to watch my body deteriorate or the knowledge of knowing that I will be the sole provider financially as well as physically for someone I love at some point in the future. There's a heck of a lot of emotions that go with that. A caregiver might not have tremors, but he or she gets to watch it all and not be able to do a dang thing about it. If you don't think that's painful, you're not seeing the tears for the grief and suffering.

2. We shouldn't get uptight if someone is trying to make us better in a way that we don't get.

If we think about it, we need to believe that most people want to help us improve our lives, even if they get the words wrong or talk to us in a way void of emotion (a pass we expect to be given AND SHOULD BE given for our raspy Parkinson's voices). They may have recommendations we don't have interest in (in my case medical marijuana to mask my tremors), but if they're offering things from alternative meds to Big Phrama's latest, it shows they're paying attention... unless they're just backdooring their own need to be stoned or they're a pharmaceutical rep getting paid on commission.

3. On that note, we should listen to George Clooney's life advice on David Letterman's new Netflix show. Whether you like his politics / movies or not, he'll inspire you, and that's what any good caregiver should do. Positive quotes videos go a lot further than another cannabis video (at least for me).

4. Many of us get worked up about ABLEISM, Is this a person offering to help me get down off a slick mountain trail as snow is coming down when said person knows I have Parkinson's? Is it a person who calls me a disabled person instead of a person with a disability? Is every person who mentions my condition guilty? Yes, it is our responsibility to teach People First Language, but we also need to live People First Lives. We need to enjoy our lives and show people we're just like Joe DiMaggio, Lou Gehrig, and Emile Zola by living our life and interests out loud! This goes for whether our hobbies are marathon running (like Jimmy Choi) or painting pictures. Like Nike says, "Just do it!" Ableism is trolls hating on us with malicious vomit. If you call me, "Shakes the Hiker" (my name for myself), that's not calling me a "shaky gimp with no purpose on earth." There's clearly a difference.

5. From a young age, we need to show kids what we have is an unfortunate part of life. We need to be age appropriate when we tell them what it is. When we can, I believe we should hide our fears since we need to be strong for kids, but when we can't, we need to let them know that they can comfort us, which will make us feel better. Making them a part of treatment empowers them with compassion, empathy, and medical interest. Besides, isn't our goal to educate and advocate on curing and caring for Parkinson's conditions?

6. OK, so thoughts and prayers are just that for some people. Maybe they work. Maybe they don't, but for people who don't know what else to say, these things show that:

A) they care.
B) they want us to get better.
C) our plight is something they actively want to help.

Whether we're religious or not, why should we get uptight about how someone else wants to do things like this? If someone wants to involve us in the ceremony, whatever, that's something different, but whatever people do in the privacy of their own home is fine by me unless it involves sacrificing a live chicken or praying to a Voodoo god (or the like) to actively intervene for my behalf.

7. This sentiment also comes out as the sad look and words of "I'm sorry," which we hear when we tell someone we have PD. I get that people don't know what to say. I wouldn't know what to say either, so things like this are "well-meaning" to me unless they're mixed with how this is a karmic punishment or a sentence from God for living a life that's out of line. That stuff should have ended with the aftermath of the Salem Witch Trials.

8. If we're going to educate and advocate, all topics are on the table. That said, if people can't handle things that are too intense, be respectful. Just the tip of the iceberg may be enough for some people. Remember, too, that it took us time to come to grips with DBS and our body's reactions.

9. If we need people to be strong for us, we need to be strong for them. Really. This makes us forget our plights and empowers us to overcome momentary pains.

10. Make life easy for those we love. Give them disclaimers and explanations ahead of time. If I could get overloaded in situations, then people already know about it. It's no biggie. Sometimes, it's easier to let them know, "It's not you; it's my Parkinson's." Help them to understand this, and when it's over, apologize for PD and do your best to give them your best. Unfortunately for my wife, she won't get new jewelry every time I don't want to deal with robo phone calls, but I'm good for hugs, love, and kind words.

11. Teach people to avoid junk news and conspiracies. This way, we don't get nonsense from them, and they don't feel that the FDA is hiding something that could save me tomorrow. If they don't understand meds, explain them to your caregivers. Also, tell them to do the Internet in moderation, and when they do go, go to a reputable site like the Michael J. Fox Foundation.

12. Teach them that not all medicines work for all people. Sometimes, we need bigger doses, or we get side effects. It happens. Medicine is a process.

13. Help sessions are good for Parkie caregivers, but avoid gripe sessions. Yes, it's important to hate on Parkinson's, but don't let it turn into, "My Parkie spouse / kid / friend sucks." That's not healthy.

14. Help us live well. Enjoy your time with us. We aren't going to die tomorrow. Understand what we can't do, but push us through our apathy to get out and enjoy life. We never know when King Kong, Ghidorah, and Godzilla are going to rage on the world. Until then, carpe diem!

15. Humor is a good thing, even if it's weird. I joke with my wife about it being a hate crime if she calls me clumsy. She always retorts with, "That's not PD; that's Dan." She's right. After all, I'm the guy who tripped over backward while trying to play the snare drum and tap my foot at the same time.

16. Express death wishes in writing via a living will. Do it now. There will come a time when someone will have to help you make medical decisions. Face that truth and make it happen. Also, confront how you need to know when to give things up (the car, your interest in hunting, mountain climbing, work, and The Real Housewives of Beverly Hills).

17. Let people know what your current issues are. Even if you're not showing past tremors, they may need to know (see Parkinson's mask). By knowing your level of disability or whether you view yourself as "disabled" (some of us still don't see ourselves at that level), they will know how to treat / help us. Caring people will care. Haters will make us contagious and ugly with their troll-like words. It's best to find caring people and avoid the others.

18. Tell them how to help us prepare for the next stage or more intense future symptoms. Let them sit in with you in your doctor appointments if they're at that level of closeness. My wife gets front row or phone privileges for all of her questions. When the appointment is done, my parents get explanations as well, and then it goes out to the family. Since I educate and advocate, this goes blog viral, too.

19. "Till death do us part" and "in sickness and in health" are just words for many people until they aren't (though they should be a sacred vow). Hardly anybody thinks about wiping someone's butt until it happens. If you have someone who is there in good times and bad, be thankful and reciprocate the love. I know that I am and that I do. If you know someone who lost a significant other to this, try to be there as best as you can for that person. The same is true for people who lose fair weather friends or get exiled from the job. Some people don't get it, but if you do, be there and educate and advocate for your friend... as much as said person feels is appropriate.

20. If you're a caregiver, you're a helper and a hero to someone. Mad props for all that you do. Keep up the great work.

Thanks for reading!