Think / Able - and Check out My Parkinson's Facebook Page

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Wednesday, November 28, 2018

Jimmy Choi: Parkinson's Like Me

When I met Jimmy Choi at the Second Annual Parkinson's Circle of Care Alliance Event, I couldn't help but notice how much his hands tremored as he huddled close to all the people he took pictures with. 

And he took pictures with anyone who asked.

Far from being a rock star / actor with a price for autographs and pictures, which can get costly for some "stars" and other known quantities (for instance, at Aliencon, pictures went up to about $150 with the 2 main stars together), Jimmy was hanging out in the hall introducing himself to fellow Parkinson's warriors like you and me before his presentation. Between discussions on legal advice and a talk by Dr. Stephen Gollomp, Jimmy and his wife Cheryl were talking to fellow Parkies like they were old friends bumping into one another at the Appleby's. He was even the one initiating the conversation!

And people, younger and older loved it. We felt a part of something like the sea of hands raised up during an earlier presentation when asked, "Who has these symptoms?" 

Is this how an American Ninja Warrior really is when he's not beating nearly half the field in how far he gets in the competition? Yes. A man who has run American Ninja Warrior in 2017 and 2018 with those same shaking hands seeming so stable as he flies through the air with the greatest of ease is just like me or you or any of us, even if he's an outlier.

But when you listen to Jimmy, he really is just like us. Some days Parkinson's get him, too. He talks about the nightmare fall he took with his son in his arms (his son was unhurt, though Jimmy knew he had to change into the new him). He talks about hesitance to do things like sign up for American Ninja Warrior or even get out of bed. 

Except something in him or outside of him just does. Maybe it's his daughter asking him what his excuse is for not applying to American Ninja Warrior in 2016 after Allison Topperwein, another person with Parkinson's, competed on the show. Maybe it's marathon training. Then again, maybe it's not a trip back to 240 pounds and a cane. Maybe it's the fact that, by nature, he's an affable, athletic, and funny guy, a leader and inspiration, but still someone you'd share appetizers with at the aforementioned Appleby's while talking about life. 

When we meet our heroes, we have this elevated ideal of who they are and what they do. After all, this is a guy who Michael J. Fox sends messages of inspiration to. This is a guy who does push-ups with 100 pounds of metal plates in a backpack.

But when he talks about how people see him as some exceptional level of competitor that they can't be since they have a nasty condition, he opens the door to let them all in on the secret. While nobody should have to join the Parkinson's club, they can all get active and beat the rigidity to some degree. After all, he's not our only athlete, which is evidenced from the presence of Rock Steady Boxing's athletes and all of us who do things to stay motivated, no matter how slow or unsteady. It's also evidenced by other runners and athletes along the way, too.

This is just the message that I need. In my own life, I find myself shaking a 2 month void of feeling like Parkinson's finally caught up to me. The mantras and the pushing back, the shaking off problems, the worry about the future, and all the responsibilities as well as the lack of responsibility; suddenly all of these things combined into a perfect storm. I needed to see someone who was just like me making it work because I no longer was (though I'm coming back to me again).

I'm glad I met Jimmy that day. I'm thankful for the opportunity to take a picture with him and my wife in the same image.

I'm glad that my mom could just go over to him and talk about appreciating who and what he is. I'm glad that his talk inspired my dad, who was also there to support me in this Parkinson's journey. It's not easy to watch your children go through this. 

Then again, it's not easy to see anyone go through this, so seeing someone who seems to be winning the fight is a necessity.

But here's the thing: you and I are just like Jimmy in that we have something that sucks, but we fight back against it. Some of us are just like Cheryl in that we have someone we love, who we support, who is going through this storm, too. Others of us are just like his children, growing up inside the storm and learning to fight it off to become a beacon of hope for all.

What a run!

In the end, the real victory that Jimmy is fighting for is hope. He's prouder of raising $250,000 for medical research and tests than he is of his run. Getting medicines and treatments ready for medical testing is paramount, and his words of encouragement for that are incredible. 

If you're interested in taking part in a study, see HERE.

In the end, we're pretty much the same. We're not one size fits all. We're good people with a bad lot in life. We're fighting back. As we do, we're making connections to one another. Hopefully, someday we can all hang out and do appetizers at an Appleby's somewhere.

Sunday, November 18, 2018

500 Song Rawkin' Rock Mix: Songs 351-500

Recently, I decided to get back to me and to create a 500-song playlist that my wife and I could listen to in our journeys. In keeping it with what my wife generally listens to on the radio, I set the bar between late 1970s and now, roughly 40 years, where the main requirement is adult radio friendly, though I did make a few exceptions based on our age and having moved through the period that is 1989-1994. If you’re interested, it’s very 80s and 90s heavy, though it does feature all years.

2.       The Police “Every Breath You Take”
3.       Prince “When Doves Cry”
4.       Talking Heads “Once in a Lifetime”
5.       R.E.M. “Losing My Religion”
6.       The Script “Nothing”
7.       Goo Goo Dolls “Iris”
8.       Gin Blossoms “Hey Jealousy”
9.       Gavin Degraw “I Don’t Wanna Be”
10.   Sugar Ray “When It’s Over”
11.   Verve Pipe “The Freshman”
12.   Men at Work “Overkill”
13.   Red Hot Chili Peppers “Breaking the Girl”
14.   Temple of the Dog “Hunger Strike”
15.   INXS “Need You Tonight”
16.   Robert Palmer “Bad Case of Loving You”
17.   Georgia Satellites “Hippy Hippy Shake”
18.   Gavin Degraw “In Love with a Girl”
19.   Jack Johnson “People Watching”
20.   Sting “Englishman in New York”
21.   Sheryl Crow “Soak up the Sun”
22.   Foo Fighters “Big Me”
23.   Presidents of the USA “Peaches”
24.   Traveling Wilburies “Handle with Care”
25.   Tom Petty “Free Fallin”
26.   Santana and Michelle Branch “Game of Love”
27.   Santana with Rob Thomas “Smooth”
28.   Matchbox 20 “Real World”
29.   Counting Crows “Mr. Jones”
30.   Hall and Oates “Private Eyes”
31.   Gotye “Somebody that I Used to Know”
32.   Aerosmith “Crazy”
33.   Plain White T’s “1,2,3,4”
34.   Sheryl Crow “Every day is a Winding Road”
35.   Coldplay “A Sky Full of Stars”
36.   Jack Johnson “To the Sea”
37.   Gavin Degraw  “Follow Through”
38.   Plain White T’s “Rhythm of Love:
39.   Lorde “Team”
40.   George Michael “Faith”
41.   Queen “Fat Bottomed Girls”
42.   Blondie “Rapture”
43.   Prince “Let’s Go Crazy (extended)”
44.   Hall and Oates “Rich Girl”
45.   The Police “Don’t Stand so Close to Me”
46.   Gavin Degraw  “Not Over You”
47.   Asia “Only Time Will Tell”
48.   Shinedown “Get Up”’
49.   Oasis “Don’t Look Back in Anger”
50.   Train “Meet Virginia”
51.   Bryan Adams “Run to You”
52.   Poison “Talk Dirty to Me”
53.   Lady Gaga “Bad Romance”
54.   Adele “Set Fire to the Rain”
55.   Human League “Don’t You Want Me”
56.   Def Leppard “Pour Some Sugar on Me”
57.   The Power Station “Get It on (Bang a Gong)”
58.   Robert Palmer “Some Like It Hot”
59.   The Romantics “Talking in Your Sleep”
60.   Hall and Oates “You Make My Dreams”
61.   Billy Joel “You May Be Right”
62.   Tom Petty “Running Down a Dream”
63.   Matchbox 20 “How Far We’ve Come”
64.   Third Eye Blind “Graduate”
65.   Pearl Jam “Alive”
66.   Foreigner “Urgent”
67.   Van Halen “Jump”
68.   Bruce Springsteen “Born in the USA”
69.   David Bowie “Let’s Dance”
70.   Panic at the Disco “I Write Sins Not Tragedies”
71.   Katy Perry + Kanye West “ET”
72.   Blondie “Call Me”
73.   Prince “1999”
74.   John Mayer “Waiting on the World to Change”
75.   Taylor Swift “Love Story”
76.   John Cougar Mellencamp “Jack and Diane”
77.   Fleetwood Mac “Go Your Own Way”
78.   Aerosmith “Cryin”
79.   Def Leppard “Photograph”
80.   INXS “What You Need”
81.   Journey “Only the Young”
82.   Bon Jovi “Living on a Prayer”
83.   INXS “New Senstation”
84.   Pet Shop Boys “Opportunities”
85.   Men at Work “It’s a Mistake”
86.   Bon Jovi “Wanted Dead or Alive”
87.   Red Hot Chili Peppers “Scar Tissue”
88.   David Bowie “China Girl”
89.   John Cougar Mellencamp “Pink Houses”
90.   Soul Asylum “Runaway Train”
91.   Coldplay “Clocks”
92.   Styx “Mr. Roboto”
93.   Imagine Dragons “Radioactive”
94.   Lady Gaga “Just Dance”
95.   Taylor Swift  “Shake it Off”
96.   Stevie Nicks “Edge of Seventeen”
97.   Stevie Nicks and Tom Petty “Stop Dragging My Heart Around”
98.   Elle King “Ex’s and Oh’s”
99.   Katy Perry “I Do Not Hook Up”
100.                        Matchbox 20 “Push”
101.                        Goo Goo Dolls “Slide”
102.                        The Script “For the First Time
103.                        Phil Phillips “Home”
104.                        Fun “Some Nights”
105.                        Foster the People “Pumped-up Kicks”
106.                        Jack Johnson “Better Together
107.                        Goo Goo Dolls “Name”
108.                        Wilson Phillips “Hold on”
109.                        Taylor Swift “Everything Has Changed”
110.                        Prince “Raspberry Beret”
111.                        Michael Penn “No Myth”
112.                        Jack Johnson “You and Your Heart”
113.                        Sugar Ray “Someday”
114.                        Coldplay “Yellow”
115.                        Katy Perry “The One That Got Away”
116.                        Evanescence “Bring Me to Life”
117.                        Linkin Park “In the End”
118.                        Joan Jett and the Blackhearts “I Love Rock and Roll”
119.                        Red Hot Chili Peppers “Under the Bridge”
120.                        Tom Petty “Into the Great Wide Open”
121.                        Katy Perry “Firework”
122.                        Journey “Any Way You Want It”
123.                        Backstreet Boys “We’ve Got It Going On”
124.                        Jack Johnson “Upside Down”
125.                        Maroon 5 “This Love”
126.                        Sugar Ray “Every Morning”
127.                        Jon Legend “All of Me”
128.                        Pet Shop Boys “West End Girls”
129.                        Murray Head “One Night in Bangkok”
130.                        Eagle Eye Cherry “Save Tonight”
131.                        Eric Hutchinson “Rock and Roll”
132.                        Matchbox 20 “Unwell”
133.                        Imagine Dragons “Whatever It Takes”
134.                        One Republic “All the Right Moves”
135.                        Maroon 5 and Christina Aguilera “Moves Like Jagger”
136.                        Michael Jackson “Smooth Criminal”
137.                        The Kinks “Come Dancing”
138.                        Train “Drive By”
139.                        Allanah Myles” 32 Flavors”
140.                        No Doubt “Underneath It All”
141.                        Natalie Merchant “Wonder”
142.                        Ke$ha “Praying”
143.                        Meredith Brooks “Bitch”
144.                        Paula Cole “I Don’t Want to Wait”
145.                        Cyndi Lauper “Time after Time”
146.                        Poison “Every Rose Has Its Thorn”
147.                        INXS “Never Tear Us Apart”
148.                        Primitive Radio Gods “Standing Outside a Broken Phone Booth”
149.                        Paul Young “Every Time You Go Away”
150.                        Counting Crows “A Long December”
151.                        Semisonic “Closing Time”

Saturday, November 17, 2018

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).