Parkinson's update & where do they get those long drug names

 

(671 words)

My neurologist just prescribed me Amantadine to go along with my Pramipexole and Levothyroxine. Or as I call them, the little green one, the pink one and the medium tan one that tastes like the bottom of a farmer’s boot.

That’s three pills, 17 syllables.

The Amantadine is supposed to improve dexterity in my left arm, which Parkinson’s has rendered as useless as a deli window salami. Side effects include vivid hallucinations in 50 percent of the patients.

An Amantadine-taking friend of mine warned me of this. He has them. I asked him to describe what he sees.

“You see whatever’s most on your mind. With me, it’s roofers. We’re having new roofs put in on three of my properties so I’ve been thinking a lot about roofers.”

I wonder if I’ll start seeing naked waitresses bringing me trays of food and drink. That’s been a persistent fantasy of mine since puberty and the years have done nothing to diminish its potency.

Either way, I’m glad we don’t live in a house with a leaky roof.

There was good news from my neurologist. She says I’m beating Parkinson’s. Those were her exact words: “You’re beating Parkinson’s.”

“I can tell by looking at you you’re doing great. Still strong. Most patients at your stage (5 years since symptoms appeared) are showing significant struggles. You display none of those. That bodes very well for your future.”

I’m gratified, but I wonder if she’s taking drugs with side effects that include overly exuberant diagnoses to anxious patients.

I don’t feel like I’m beating Parkinson’s. Distracting it, maybe.

I know it’s one of those things that’ll be uppermost in my mind until the day I die, which leads me to fear I one day might transmit the disorder to all those naked waitresses I’m hoping will appear in my hallucinations.

I wonder how long it’ll be before the number of pills I take outnumber the number of fruits and vegetables I eat.

Or alcoholic beverages I guzzle.

I think every pill comes with prudent instructions to avoid alcohol.

To which I say, how the hell am I supposed to do that? I work in a building that has three bars lavish with booze. I daily stroll past two of them on my way up the stairs only occasionally succumbing to temptation’s pull. 

What am I supposed to do? Heave a grappling hook up onto the roof and scale the walls?

No. I’ll not let a little pill boss me around. I invite it into my body — my party — and I expect it to play nice with the other guests. 

I think I’ll begin to worry when I top 100 syllables in daily pharmaceuticals.

A big chunk of that could come if I’m ever diagnosed with melanoma. The skin disease is treated with Talimogene laherparepvec (tal IM oh jeen la her pa REP vek). I imagine the name hula hoops twice around the little pill bottle.

Then there’s OnabotulinumtoxinA, which sounds less like a treatment for debilitating motor skills and more like one of the brain puzzlers used to stump final round contestants at the National Spelling Bee.

Where do these names come from and do the smock-wearing namers ever try to name a pill Phil?

Well, it turns out the naming of a generic drug is highly regulated — and informative. Each syllable tells a story.

Reliable web sites — are there any other kind? — say “Pharmaceutical names are assigned according to a scheme in which specific syllables in the drug name (called stems) convey information about the chemical structure, action, or indication of the drug.”

So, conceivably, there are men and women who have committed to memory vowel-devouring words of up to 20 letters. I have no idea of how to identify these people by sight but if one day one them becomes my partner in a high-stakes game of Scrabble, man, you’re going to hear about it.

Because a rose by any other name is still a rose.

Same goes for Dapagliflozin.

Related …

So, okay, I have Parkinson’s

The suicide pill 

Prince & the Nation that pees purple

In the ring: fighting Parkinson’s with boxing

Deep sixing heart attack plans

I'm told I exude calmness; is it Parkinson's?

 

(767 words)

It was a startling sort of compliment about a man who appeared hard to startle.

That man was me.

We were having basement party cocktails with two other couples when a 40-ish woman I’d just met said I exuded calmness. Her smile made it clear she meant it as a compliment.

Of course, she did. We all seek reassuring calmness during these tumultuous times. The Weather Channel forecasts the floods and fires, while their cable counterparts forecast nothing but shit shows through 2021. 

True calm is as elusive as mercury on marble.

Am I calm? Hell, no!

Thanks to reports of random gun violence, I’m afraid of getting shot. And thanks to reports of the Election Day politicization of vaccines, I’m afraid of getting shots.

My book is coming out this week and I’m fearful it won’t do as well as my last two books. My last book had a smiling Mr. Rogers on the cover and it did very well. Fred Rogers is a globally recognized and universally beloved icon.

The book before that had a picture of Arnold Palmer on the cover and it did very well. Palmer is a globally recognized and universally beloved icon.

This book has a frowning picture of me on the cover appearing to be on the lookout for a bus that will never arrive. I’m a cheerful nobody grudgingly tolerated by about one-third of the people who frequent the Tin Lizzy.

Calm?

Inwardly I seethe.

But her comment required a reply. I calmly evaluated the honest answers to what I’m calling the “I may look calm on the outside, but inside …” game.

• “… I’m horny!” — Mine was the first generation to grow up immersed in soft core cable porn on the then-new HBO. And by soft core I mean we could watch comely Angie Dickinson romping nude in R-rated movies like “Big Bad Mama” for hours and never see a penis — and I had a sporty one of those so I was fine with that. I don’t know if previous generations thought more about sex, but the only time mine’s not thinking about sex is when it’s time to think about what to put on the pizza. But announcing, “I’m horny!” in a room full of consenting adults can lead to complicated situations if, say, someone besides your wife replies, “What a coincidence … I’m horny, too!”

• “… I’m all talked out!” — Buck, my friend/landlord/inebriator/fellow philosopher, says life would be more bearable if when we were born we were each given, say, 500,000 words to use throughout our entire lives. People would be much more circumspect about wasting words on idle chat. Me, I’m closing in on 500,000 but it’s more that I don’t feel the need to yap as much as I once did. We’re in the midst of a Cat 5 word storm and I simply don’t feel obliged to contribute.

• “… I’m anxious!” — It’s like our lives have become an endless “We Didn’t Start the Fire,” loop.  The 1989 Billy Joel song compresses 40 years of panic headlines into 4:49 of melodic mayhem. Only now it’s like we’re living 40 years every 12 hours:

Comey Cohen Cuomo SNL RBG Stormy Daniels NOT FOR ME!

WE DIDN’T START THE CALIFORNIA FIRES!

• “… I’m no longer graceful!” — It’s been two months since I tumbled on the way home from the bar (don’t judge me) and my foot has yet to heal. So sometimes when I appear calm, I’m really trying to game plan how to get to the bathroom without clumsying into the snack table. I know it’s beneficial to stay off it — and I try. But telling a two-legged man to give up walking is like telling a fish to stop swimming. So along I limp.

I could have said any of those things. But no. Here’s what I said:

“Now that you mention it, I am feeling rather serene.

“It’s either that or it’s another symptom of my Parkinson’s. I hear some people deal with a condition known as ‘frozen face.’ It’s when the muscles in the face refuse to react to expressive reflexes. I’ll be seeing my neurologist soon so I’ll ask her about it. You could be mistaking that for inner peace But that’s just Parkinson’s.

“Anyhoo. What were we talking about?”

No one made a sound. Every face had gone blank. They were completely immobilized.

Talk of my frozen face had iced theirs.

So I felt bad. My killjoy supposition’d bummed out the party.

Next time I’m just going to go ahead and tell everyone I’m good and horny.

Related …

Not broken, but … My foot injury

Speed reading as unwelcome as speed sex’’

So, okay, I have Parkinson’s

In the ring: fighting Parkinson's with boxing

(771 words)

I became a personal pacifist in 5th grade a split second after my right fist caved in the face of Mark Duncan on the front steps at Julia Ward Howe Elementary School.

So at the age of 13 with blood on my knuckles, I’d renounced violence in front of a building named for the composer of “The Battle Hymn of the Republic,” a song that exalts the Lordly unleashing of His terrible swift sword.

Glory! Glory! Hallelujah!

Mark had the day before spit in my face for reasons I still do not know.

We were in 5th grade so it wasn’t like he’d busted me for hitting on his wife.

That didn’t happen ’til, oh, 6th grade with Mr. Apple, suspiciously alert husband of  Mrs. Apple, my 6th grade teacher.

I just recall a righteous fury as I wiped his hot spit from my befuddled face. In that instant and years before I’d ever watched a single episode of “Mannix,” I fully understood the concept of justifiable homicide. 

It’s a pity I became a pacifist because, clearly, I could have been a world champion pugilist and I hear there’s good scratch in that.

His head snapped back — hell, it nearly snapped off. I thought I’d killed him. I felt oddly apologetic. We never spoke again. If he saw me coming, he’d duck behind locker. I fear my punch severely deformed his psychological composition. On the other hand he probably learned spitting in someone’s face is an unwise tactic when it comes to interpersonal problem solving.

I mention all this now because after 44 years, I’m training for a fight against a foe more consequential than that childhood slobber slinger

I’m fighting Parkinson’s Disease. And I’m kicking its ass!

Uh, not really. See, I gotta be honest. I knew writing that obligatory rah-rah sentence would feel phony.

You don’t beat Parkinson’s. You either come to some sort of accommodation or you surrender to it. To me, it’s like being in one of those old movies where the lawman and the escapee are shackled and on the run for reasons that take about 90 minutes to resolve. 

Doctors describe my status as “slow progressing/high functioning.”

(In fact, I saw my PCP yesterday after I’d started this and he declared I’m in otherwise excellent health. If only …)

I have a noticeable limp and watching me put on a jacket is like watching Houdini trying to escape from one. My left arm is basically useless. It just hangs there like salami in a deli window. I type one-handed with the same hand I once used to devastate a 5th grader spitter. 

They say exercise is a key to slowing symptoms. So, I work out at Planet Fitness about four times a week, but I find terribly boring. Perhaps I should set a goal of looking decent in a Speedo by spring, but that kind of vanity exercise would lead to too many drastic lifestyle changes and I’d miss my Tin Lizzy time spent keeping my body all soft and cuddly.

But experts say one of the best ways to fight symptom progression is to put on boxing gloves and get in the ring. One headline: “Punching Out Parkinson’s Symptoms: How Boxing Helps.”  The story says boxing helps Parkinson’s patients maintain higher levels of function and quality of life than those who engaged in other forms of exercise.

So for three months now I’ve been going once-a-week to Ground Zero martial arts academy on Latrobe’s Main Street. I like owner instructor Jeremy Kosicek in that he’ll spend 30 minutes teaching me how to fight and then spend the next 30 minutes philosophizing with me about the folly of living in a world where so many people are so eager to fight.

I’m very fond of him and thus feel sheepish about my eagerness to corrupt his admirably healthy lifestyle in favor of sitting, boozing and BSing with me in dark taverns, which remains my favorite pastime.

My sessions involve shadow boxing, footwork, balance, rhythm and hitting the heavy bags. It’s very invigorating.

He tells me I’m a natural and that he’ll soon have me ready to pound the crap out any surly assailant.

But it is an ego boost to hear I’m becoming skillful at the most manly of arts.

And the opponent I’d most like to clobber is the one that resides inside my own head. It is patient. Time is on its side. It will win.

It’s up to me to make the most of my time until the final rounds.

You should, of course, be doing the same.

Related …

So, okay, I have Parkinson’s

Deep-sixing heart attack plans

Latrobe’s best hugger is …

My left arm is dying

Golfing with my handicaps

(675 words)

It is said with an earnest concern I find humbling, which is why I feel ashamed when I respond with jackass humor whenever someone asks me if because of my condition I’m unable to golf.

“No, I can’t,” I say. “I can’t drive. I can’t putt. My short game is appalling. So, no, I cannot golf.”

I let that sink in a moment before delivering the punchline most of you saw coming a mile away.

“… But then again, I never could.”

Thus, this is a story about a chronic muscular failure combined with a neurological regression that leads to anxiety and persistent feelings of failure.

Think I’m talking about Parkinson’s? No. 

I’m talking about golf! 

And because this about golf, I feel compelled to once again share the greatest line I’ve ever heard about golf, which isn’t really about golf at all, but is instead about sex.

And in the end it’s always about sex.

I was talking in 2007 with a new golf fanatic — he was in his mid-30s — who’d driven 38 hours from Denver to Pittsburgh to watch Tiger Woods play golf at Oakmont. He was out of his mind for golf.

“The first time I ever set foot on a golf course was 6-months ago. It was the most fun I’ve ever had at something I was so bad at since the night I lost my virginity.”

I told him I wrote for Golf Magazine and that was the greatest line I’d ever heard about golf.

He said, “You write for Golf Magazine? Man, you must be good!”

I said assuming I was good at golf because I wrote about the sport was like assuming sex with an adult film actress would be really hot just because she’s done a lot of porn, which is maybe the world’s worst analogy. But I persist in using it because it allows me a moment of illicit revery about sex with a porn star and that always leaves me feeling, oh, what’s the word?

Presidential?

I’ve played twice this year. Had a 108 Tuesday at Ligonier C.C. and spent a good deal of time wondering why I continue to pursue something I’m so bad at with no realistic hopes of a more satisfying performance — and we’re talking about golf, not sex, although the lines are beginning to blur. 

People ask if golf is so frustrating, why bother spending 4- or 5-hours doing it, a statement that is about 98 percent incorrect. Very little actual golf occurs during your typical round of golf. 

Your average golfer is only golfing for about 3 minutes during a round of golf, that is 3 minutes when the golfer is standing there engaged in the process of executing an actual golf shot golf.

The rest of the time is spent drinking beer, racing golf carts, whizzing against a tree  and gamely laughing at everything your mates say the way the gang at the old Bada Bing laughed when Tony Soprano cracked a joke. 

One of the requirements of being an acceptable golf partner is to lol in non-humorous situations where other people merely type lol.

Faking a good maniacal laugh, like faking a gangbuster orgasm, is tedious, but both deceptions can be essential to building relationships. 

In golf, fake laughter establishes open-minded acceptance so authentic camaraderie can be achieved later on when everybody is good and drunk and everything seems funnier than when you’re sober. And that golf camaraderie is for me the best part thing about golf.

It’s why I’ve lately been quoting the line, “A great day of golf involves where you played, how you played and with whom you played — and the first two are overrated.”

So, yes, I’m still playing golf and taking great joy out of a day spent drinking beer, racing golf carts whizzing against a tree and playing about 3 minutes of golf.

The instant I can no longer enjoy a day like that, well, I’m screwed.

Told you it’d in the end be all about sex.

Related …

Finally, I golf

After 15 years, turning the page on golf calendars

NYTimes features me, my ace book

Dad had real balls, real (golf) balls

Yesterday, Arnold Palmer watched me golf

Of golfers & God

Optimist gets world's worst rejection letter

(702 words)

In my evergreen attempts to gauge my occupational results (pathetic) versus my potential (monumental), I think I’ve settled on what kind of following I have. It is thus:

I have a cult following.

That sounds presumptuous until you consider the kind of cult writing like mine inspires.

My cult is polite, proper, has good posture and excels at things like living room “Jeopardy.”

This is opposed to the kind of cults that indulge in drugs, random sex and stand on street corners and harass strangers as to why they should sell their possessions and follow me in ways that have nothing to do with my lame Twitter account (seeking followers @8days2Amish!).

But I’m always tickled when someone tells me how much they enjoy my blog or my books — and some of them are sober folk, too!

One of my favorite’s is my buddy Greg who’s told me, “You’re the reason I’m glad I have insomnia.” It’s true. He says when he can’t sleep, he goes back and reads in reverse order nearly all my 2,000 blog posts from the past 10 years.

He says he laughs out loud, which inevitably awakens his wife, who I must assume either hates my guts or at least wishes my blogs were full of things like golf or pottery tips or other LOL-free topics.

But he’s not alone. I’m always hearing the kind of feedback that buoys me into believing one day all this deliberate typing will pay off.

I keep thinking I’m on the verge of some breakthrough where literary agents and publishers see me through new eyes. A prestigious agent who was once indifferent to my book proposals replied to my latest idea to say just that.

I now make him sick.

The book proposal is “The Art of Living Suddenly: How to Deal with a Parkinson’s Diagnosis (& other things that suck).” It’s about how anytime we hear of anyone dying suddenly we need to commit to living suddenly.

Here’s what he wrote:

“Thank you so much for writing. Your book hits me too close to the bone: both of my parents had Parkinsonism-induced Alzheimer’s disease, and I watched them die from it. I’ll likely get it, too. More specifically, Robin Williams was diagnosed with Lewy Body dementia, a particularly nasty variety of Alzheimer’s that I’ve also seen up close and personal. I’m afraid it’s a pass from me. I do not think you should pursue a project that has the potential to upset readers the way this upsets me.

Frank

I swear I went back and read it twice to be certain I didn’t miss the part where reading my proposal made his penis detach.

Really, I think a guy like Frank would benefit from reading a book about sudden living. He seems haunted by a future that may or may not ever come to pass. Who knows? They may find a cure for what killed his parents or he may enjoy a symptom-free life.

Or he may get hit by a bus today on his way to the Friday bowling meet.

I mean, you always have to look at the bright side.

I without fail do. I mean, I was floored by the scalding desolation of what I consider to be among the worst rejection letters ever sent — and, by God, I’m something of an expert.

But I got up and am back up and at ‘em today, forever convinced I’m right and anyone who rejects me is wrong, wrong, wrong.

In that way, I’ve always considered myself the Lucas Jackson of rejection-riddled writers. Luke is the Paul Newman character in the peerless “Cool Hand Luke.”

“Dragline” (George Kennedy) beats Luke so thoroughly he becomes exasperated at Luke’s stubborn insistence on rising to rejoin a battle he cannot possibly win.

“Stay down, man,” Dragline pleads. “You’re beat.”

“You’re gonna have to kill me …”

In the end — spoiler alert! — they do just that.

I’ve for years tried to divine some profound lesson from Luke’s struggles and all I can figure is it’s "don’t buck the system or the system will kill you."

So I’ve perhaps learned the lesson.

I’ve just never applied it.

And I never will.

Related …

Reject me, please

Too self-deprecatory? Me? Here’s why …

My novel frustrations

Praise for “Last Baby Boomer”

Someone stole my book!