State of the Blog

It's been a long time since I wrote anything here. I thought I would for Christmas, and then time got away from me. I didn't even have time to post last year's Christmas thoughts. I also thought I would be able to write for the end of the year or New Year's Day, but I didn't. Then the new year started to progress and with that, my wife's and my trip to Italy (Rome, Venice, Florence, Pisa, Pompeii) was coming up (we needed to get ready for that), so by the time we got back from that, I was on an intense working 2 jobs schedule with lack of sleep and sinus crud for a week before rest, recovery, and have to as well as downtime.

Somehow, I made it through, and well... here I am.

As a Parkie, I can say that I definitely need some downtime when the world is just too much. Being alone or being mindless with the TV are good things, even if they aren't productive. I'm sure a lot of you in the early stages, like me (I'm somewhere in 2), are experiencing that now. I'm sure others of you have experienced this. Sometimes we get too tired to sleep, let alone read or function as anything more than "I must get up and refill my drink and get a snack." However, it's at these moments that we have to move and fight back against PD.

Yes, it's at these times we have to stay mobile and active. It's been said by many; exercise to decrease rigidity and disease progression is essential. For this, I'm glad that our local rails to trails (above) is finally finished. Yes, it seemed to be raining a lot last year, but sometimes we just need to push through it (as long as we can take care of ourselves while doing it). Our bodies will appreciate it. I know mine appreciated being walked so much in Italy (my dystonia even cooperated!).

One of the things that I'm contemplating writing is how much the fluctuating dopamine in my brain produces a wave of different emotions and responses. Depression, Anxiety, Anger, and Irritability. Yep. They're the 4 Horsemen of the Apocalypse of My Brain.

But I don't want to think about that now. I have a chance to write something to start a new year out here, continue to sort out my pictures from Italy (color and black and white - note since it's Italian art, not everyone - i.e. David and Venus, as well as many other artists' subjects - is fully clothed, so view as appropriate!), as well as write for Parkinson's Disease Dot Net, so I think I'm going to go to my mellow place since my wife is home (early, like me) safe and sound. As the snow piles up and the cold comes in, I expect it to be a horrible icy morning tomorrow. I'm hoping the last of my snow days can fight it because the roads were nasty this afternoon.

Home and protected from that is a good thing.

There's something about home that really feels good. It's the feeling of being safe, loved, and belonging where I am. There's something comfortable about the couch, too. Sure, home isn't like being exhilarated in the great outdoors or in some spectacular man-made confines, but it definitely works at the end of a long journey.

All in all, my time in Italy was a great trip, though the comparison of poverty to wealth showcases / priceless art galleries is very sad. When homeless people are passed out and practically living on the steps of ornate churches that are covered in pristine sculptures, paintings, and mosaics, something feels "off." I'm not sure what the answer is, but it was something I noticed. We much preferred Venice and Florence for the art and architecture. Pompeii was also incredible, but I'll elaborate on them later.

We returned home to the cold and respiratory crud, which isn't fun, but as I said, there's something about being home. I like how John Dos Passos expressed it in the U.S.A. Trilogy (written after World War 1):

“U.S.A. is the slice of a continent. U.S.A. is a group of holding companies, some aggregations of trade unions, a set of laws bound in calf, a radio network, a chain of moving picture theatres, a column of stock quotations rubbed out and written in by a Western Union boy on a blackboard, a public library full of old newspapers and dog-eared history books with protests scrawled on the margins in pencil. U.S.A. is the world's greatest river valley fringed with mountains and hills, U.S.A. is a set of bigmouthed officials with too many bank accounts. U.S.A. is a lot of men buried in their uniforms in Arlington Cemetery. U.S.A. is the letters at the end of an address when you are away from home. But mostly U.S.A. is the speech of the people.”

Yeah, there's something about finding your car at the end of the journey and reflecting on all that is and all that we are because of it. "U.S.A. is a part of my identity, even if I'm seeing the world."

For me, the best part of the journey was being speechless and in tears from the beauty that is the Sistine Chapel (Virtual link here). I had seen God and Adam's hands touch before, but I never saw the totality of an act of discipline, talent, and faith quite like that. For the first 10 of the 15 minutes of our tour, I couldn't figure out where to start, it was just so immense. I'd love to just have an afternoon to sit there and feel the power of Michelangelo's art, but alas... tour schedules limit this. We spent over 2 hours in the Vatican Museum and still didn't see everything.

And yes, I did get to take my Nana to the Vatican. I think she would have liked it.

The lowest part of the trip was "crashing" emotionally at the Colosseum. It's a longer post, but essentially between running late + missing our tour (we rescheduled for a different day), not eating / drinking / sleeping regularly, and being harassed by street vendors, I had enough, and I found myself sitting on a bench with my wife, crying, as I told her she didn't understand how bad the Parkinson's emotional hell ride can be.

I don't understand why the Parkinson's emotional hell ride is as bad as it is. How can someone who doesn't have it understand? At least there's empathy and support to compensate.

All the same, for the state of my blog, I'd rather just focus on things that make me happy, like free breakfast day at work or when Bryce Harper and Manny Machado will "settle" for their contracts.

After the trip, I decided to take an art history class (free through work). It's the first class I took since 2010, and it's my first online class. There's a lot of neat stuff to learn in it, and I want to be able to talk knowledgeably about art when we go to museums (next stop Athens, Greece, in late March). I also don't want my wife to worry that I'll either make her take pictures of me in front of paintings or try to touch a statue or painting. Hence, this seemed like the right class. Besides, learning is a good thing, and I believe we should all engage in lifelong learning as much as possible. Most of us have learned a thing or 2 about our conditions over time. Why not learn something fun, too?!!

As I sit in the online class responding to discussion posts, I find myself missing teaching. Now, I don't miss the grading or any of that stuff that goes with management, but I miss the "being involved in active transmission of learning." Contemplating that, I realized for the first time since I made the decision to not teach that I missed something about teaching. It felt like a void in identity, as if a part of me was "changed." Maybe I can find a way to philosophize at the Pantheon or something, but for now, it just feels like a part of me is missing.

Damn you, Parkinson's!

So yeah, here I sit, contemplating how to take my blog back from the "bots" that invade from foreign medicine or NSFW websites. Yes, as a blogmaster, I see where my traffic comes from (while not posting regularly, much of it was coming from Russia). Hundreds of hits would come out to link to my Parkinson's discussion. I can see what there names are. Mostly, they're just "hands off" type names, but the first one I clicked wasn't. Bad move. I'm not bothering to look at these again!

In the end, I have no idea why these people link to me. There's only 1 post on PD and effects down there, and it's hardly tantalizing to reflect on how PD affects urinary and sexual functions.

I also have no idea why I get inundated with spam from med sellers. Has anyone ever clicked on 1 of those buy medicine sites that they see in a comment list or e-mail? Man...

But yes, here I am in 2019, thinking about how we're almost 1/12 of the way to 2020, thinking about all of the things that I want this year to be, and thinking about how I still appreciate everyone who reads, read, reacts to what I have to say. There's still more to talk about.

It's just a question of time to do it all.

25 Therapeutic Concepts for When Times Get Tough

A few weeks ago, there was an incident that I was all set to write about. In the news event, Olimpia Warsaw, a 67-year old woman claimed that she was left neglected in Chicago’s O’Hare Airport. As I thought about what had “happened,” I felt irate that this could happen to someone.

Only it never happened.

Security footage proved that it was all part of a scam, which got me even more irate, since as a person with Parkinson’s, she was using our shared condition for money and pity. After they heard about the situation, American Airlines did the right thing as they initially helped her out before the investigation, but in the end, their investigation turned up the misdeed. However, in the aftermath of the ploy, the damage was done.

I could elaborate on my feelings on that part of the situation, but I don’t think there’s anyone defending the woman or not acknowledging that instant karma got her good, so instead, I’ll reflect on my feelings of not getting left alone / behind, which is where I originally intended to go. 

I proceed this way not to let her off the hook, but rather to say that when the universe takes care of itself. Here, there’s no need for opinions in 140-280 characters or less. What’s done is done. I wouldn’t think that anyone reading this has any interest in acting like she did. Why would we? We’re good people. Even if a segment of society sees itself as only 1 frivolous lawsuit away from financial freedom, why would good people do those things?

In the same way that I mention this situation, I think of “Dead Grandmother Syndrome” and the warning that teachers have to make sure that any extension and mercy given to students when their relatives died before finals came with an obituary. Apparently, when it comes to times of desperation, people get creative.

In my life, one time, the house my family was living in really did have a fire. I was working at a bookstore at the time, and the one assistant manager there was skeptical of the incident. He didn’t go so far as to force me to prove it, but he wanted to. Hence, the next day, I broke out the newspaper report. I guess I understand his need to hesitate, but still I felt a need to present the article as an exclamation point to my truthfulness.

Why would I lie?

Which brings us to times of desperation. It’s that time of the year when everything comes back around to the feeling of things catching up. How do we, especially people with Parkinson’s, dystonia, neurological conditions, disabilities, depression, and other numerous maladies or horrible circumstances deal with it when the world comes crashing down and there’s so much to do?

For me, I think about my have to’s (work, relationships, already paid entrance fees, sleep, eating, self-care, etc.), and I realize like at the end of every year I can remember, I’m either seasonally / exhaustionly sick or just plain tired. The end of the term always does it, even as a peripheral education worker (and no longer a teacher).

Some people think of safe and happy places as a snowflake kind of thing, but I disagree. We all need to escape harsh reality and be able to find happiness in a place where our needs (as dictated from Maslow) can be met like a kitten purring on a cushiony place. If they aren’t, we will become more fragile and break. We will become desperate and do whatever we can not to break, even if it's morally challenged. I think it’s safe to say that’s what makes Olimpia and people who lie about illnesses do in these spots.

As a person who is currently filled with nose, throat, and chest crud, as well as head swirl and too many sinus meds (and a lack of Parkinson’s meds so I can take the sinus medications), I know the feeling of sickness and wanting to be away from it all. For the entire autumn, my body fought this, and then WHAM! Friday into Saturday, it came. Sunday into this morning, it slammed. With some antibiotics, I now feel better. However, I’m still sweaty, run down, and exhausted with some of the congestion hovering around. All the while, I hope it’s not pneumonia’s early stages as the nasal drip leaves me wheezing. Fortunately, I have an inhaler, though I look to make sure it doesn’t increase my heart rate.

So as I sit here typing, a post I haven’t had the time to write in weeks, I have decided to give you 25 December thoughts to think about in order to help you find your mellow place so you don’t get stressed out.

1.      When stoic doesn’t work, proceed to hug therapy.

2.      When hug therapy doesn’t work, proceed to let someone else help.

3.      When letting someone else help doesn’t work, proceed to let someone else guide you to the right choices.

4.      When letting someone else guide you to the right choices doesn’t work, proceed to let someone else take over the help.

5.      Visit with friends (in person, on the phone, online).

6.      Get artistic. Whether it’s for you or to make someone else a gift, it’s all good. Adult coloring books work for a lot of people.

7.      Do something energetic. It doesn’t need to be extreme to work.

8.      Go online to talk to friends.

9.      Count your blessings. Someone else has it worse than you.

10.  Don’t buy more gifts than you can afford.

11.  Go play with the puppies at the mall.

12.  Compile a list of songs to make you happy.

13.  Write your frustrations out and throw them away.

14.  Google inspirational quotes and apply them to your life.

15.  Find philosophy / theological ways to feel better.

16.  Happy foods / drinks in moderation (note – this is not a call to get drunk… some people like hot chocolate. I’m a raspberry iced tea guy / this is all not a call to binge eat… a snack will suffice, whether healthy or sugary).

17.  Reward yourself with something you’ve been wanting.

18.  Look through old pictures of happier times.

19.  Go to a garden (whether for statues or indoor flowers). If you can’t get outside, watch Monty Don on Netflix.

20.  Watch Anchorman 2 or something you find funny.

21.  Give yourself permission to scream loudly or hit a punching bag (don’t take things out on others).

22.  Don’t drive or be driven to the mall area. Crowds aren’t therapeutic.

23.  Live vicariously through others.

24.  If it doesn’t have to be done, put it off for another day. You have my permission to do nothing.

25.  Make plans for better days!

No matter what you do, remember:

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.

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.

Songs 1-200 of the Rawkin’ Rock / Pop Compilation

Songs 201-350 of the Rawkin’ Rock / Pop Compilation 

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”