Showing posts with label Parkinson's Disease. Show all posts
Showing posts with label Parkinson's Disease. Show all posts

Friday, February 15, 2019

A Happy Birthday update on my condition


It’s been one year and one day since a brusque tech with no time for blow-softening small talk told me test results indicated I have Parkinson’s Disease and that there is no cure.

I asked what I could expect next.

“Well,” she said, “are you still capable of feeding yourself?”

I told her I’d heroically downed a donut for breakfast but some of the pink Valentine sprinkles fell into my lap. Was it time to summon hospice angels?

That was a low.

The highs? I’ve been the welcoming recipient of numberless hugs, prayers and more than a few offers for free bucket-list fun.

One buddy wants to take me to Scotland to carouse. Another well-heeled gent wants me to pick my itinerary of the top three golf courses I’ve always dreamed of playing. And an old friend with a deep expense account and casual ethics about how it’s disbursed thinks we should roll the dice in Las Vegas.

He knows a houseful of showgirls!

Lesson: people are extra nice to you when they’re convinced you’re not going to be around to be such a pain in the ass much longer.

Given this outpouring of concern and lush largess I’ve struggled to find a logical reason to to tell people, sorry, I’m not dying.

Not yet. I hope. 

Oh, and today is my 56th birthday.

Part of me worries that if I tell people I could be around another 15 to 20 years they’ll be disappointed. And I’m sorry to disappoint people by persisting to exist.

Don’t you hate when that happens?

It appears, alas, that may be my fate.

“The great misconception about Parkinson’s,” one doctor told me, “is when you tell people you have it they think it means you’re going to die and you’re going to die soon. It’s the best incurable disease you could wish to get.”

And isn’t that a perfectly charming way to convey bad news?

People ask me how I’m feeling.

“I feel like I’m living life perched atop a trapdoor with a rusty hinge.”

The docs say that’s a poor analogy. I say they’re wrong. It’s a wonderful analogy.

It’s just not in my situation an apt one.

Any downturn in my condition won’t be as dramatic as disappearing through the floor. It’ll be gradual.

My doctors say my PD is slow progressing and that I’m high functioning. That’s good. The worst part for me is the virtual uselessness of my left hand when it comes to typing. 

It’s a detriment to productivity — as if I need yet another one of those.

Along those lines, some people have asked if I’m going to stop drinking alcohol. 

I should note that none of these people tend bar at the Tin Lizzy where they spend their entire shifts ensuring the inebriation of me and my drunken friends, the ones who’d never dream of asking silly questions about my drinking.

In fact, I don’t drink near as much as you think — or as much I’d like — but lively saloons have been my native habitat since, gee, about the 4th grade. 

I excuse this habit because I tend to be a gregarious person toiling in a very solitary endeavor. Solitary that is if you don’t count the 1,000 ceaseless voices raging in my head. At the end of a long day (usually about 2 p.m.) it enriches my soul to stop working and go out to be amongst the folks.

And the left hand doesn’t mind pitching in when it comes to raising a glass so I count it as part of my physical therapy!

Some PT sessions did wonders for my attitude. My enthusiastic therapist says I’m in a great position to keep symptoms at bay for many years. She said my eagerness to exercise will play a pivotal role in ensuring I will have many quality days in the years ahead.

My goal is to exercise with such fervor that years from now many of you will seethe with suspicion that I faked the whole diagnosis just to get hugs, attention and free golf.

And that one of you will be so incensed you’ll shoot me to death in my sleep, a much tidier demise than ones I’ve darkly envisioned during low points of the past year.

What can I say? You have your bucket list. I have my kick-the-bucket list. 

And I hope I am deserving of any kindness you extend to me as I continue to lurch bewildered through what’s left of this sweet life. I will be happy to reciprocate.

Because I intend to live for as long as I’m not dying.



Related …







Monday, December 17, 2018

My left arm is dying


This is the first blog I could have written with one hand tied behind my back. 

Not because it was a breeze or required little agile effort. No, the reason I could have written it with one hand tied behind my back is because Parkinson’s Disease has rendered my left hand virtually useless. It just hangs there, an anatomical ornament dangling from an untrimmed trunk.

When I try and summon the south paw to assist it treats me like it’s one of my daughters when I ask them to fetch Daddy a beer. 

It just pretends it didn’t hear me.

How bad is it?

It’s so bad if I was engaged in a duel, my adversary could stroll up and insert the fatal bullet manually before I could draw my pistol. 

So my dreams of becoming as ambidextrous as Leonardo da Vinci are in the midst of being dashed. The great daVinci (1452-1519) thought using one hand was a gross inefficiency for any two-handed animal. He wasn’t right-handed. He wasn’t left-handed.

He was both handed. 

When he deemed it necessary to indulge his creative side by, say, painting a horse, he would pick up two brushes, one for each hand, and only then turn toward the canvas. With equally bold and confident strokes, he would with his right hand begin painting the horse’s face, with his left the horse’s ass. 

In less than half the time it would take a common and competent painter working with one hand, he’d be done. Che Bello! A lovely horse grazing in a field.

Such devotion to hyper-efficiency has long roiled art historians who are prone to speculating: Should such manic ambidexterity be aspirational? Is technique ever a worthy sacrifice on the altar of artistic efficiency?

Me, I wonder about different stuff. Like what kind of anatomical calculations went through the genius’s mind when he felt like jerking off?

Many friends are suggesting I try a computer dictation option, something I’m reluctant to pursue. Much of my writing to me looks stupid on the screen. How would it sound?

Or what I was wrong? What if my blogs A cappella become such a sensation strangers begin to flock to my office just to hear me orate?

Why, I might have to start wearing pants to work.

I remember from my freelancing days a story about an Indiana woman who overcame being born without arms.

It was a good story, sure, but I was always seeking a lead nugget, a factual firecracker that would electrify the attention of a prospective Enquirer editor. The story said she cooked with her feet, drove a car and was a member of the local bar bowling team. That’s all good.

But buried deep in the story was the line I was seeking: She even typed 30 words a minute — with her feet!

That was my lead: “Armless woman types 30 words a minute — with her feet!” I thought it was money in the bank. So I was surprised when I didn’t hear back from the editor. I called him up.

Didn’t he want me to get on the story?

“No, thanks. We’re not interested.”

You’re not interested? Why not?

“Well, 30 words a minute … That’s not much!”

I’ve sometimes wondered what that old editor would have thought of da Vinci. I suspect he’d have found a way to pooh-pooh it.

Me, I worry about how my affliction will hamper my already woeful productivity. I remember reading Isaac Asimov’s tart reply when asked what he’d would do if told he only had six months to live.

“Type faster,” he said.

My PD has robbed me of that aggressive option and these days my concerns are far more pedestrian. 

Now, I try mightily to not tip over when I tie my shoes or elevate myself from the comfortable recliner. The worst is simply trying to put on my winter coat in any public place. I struggle. I writhe. I look all tangled up.

The one dead arm can make me look like some half-assed Harry Houdini.

I’m becoming very self-conscious. In short I strive to look normal doing simple things that were once, well, second hand.

Yes, a man who once aspired to use his left hand to paint the horse’s ass now struggles to merely avoid looking like one.



Related … 




Tuesday, August 21, 2018

UPS time management standards I ignore


So there we were, one of the world’s most efficient men answering questions about hyper-time management from me, one of the least.

It was just the UPS guy and me. I kept trailing in his busy wake asking one thing then another like I was a 6-year-old on “Take-Your-Son-To-Work” day and the UPS guy was my old man.

Does he ever get a break?

“No. They monitor our every movement to ensure we’re operating at maximum efficiency,” he said. “They know when my seatbelt is unfastened, when I deviate from my appointed route and when the truck is idling too long in one place.”

So, I said, scheduling a quickie with a downtown hooker must be a nightmare.

He laughed for precisely 1.3 seconds.

He was there to deliver 10 more boxes of my popular new Arnold Palmer book, soon to up the total I’ve sold all by myself since April 4 to 1,500. I’m proud to tell people I wrote the book in five snappy weeks.

I don’t tell the UPS man this because I’m sure he’ll reply the company has an app that would have let him write  it in just four.

Four hours!

I don’t know whether I was more impressed by his blazing efficiency or by his cheerful manner. Never once did he stop moving and never once did he ever stop smiling.

This is one delivery man who’ll never go postal.

It was a pity I couldn’t persuade him to join me on the porch for beers and more idle conversation. I enjoy sudsy philosophizing with opposites

Of course, maybe he was being monitored by a tiny UPS drone overhead capable of firing painful BBs into his neck should it overhear him saying anything derogatory.

He told me the reason they no longer require signatures confirming delivery is some UPS beancounter calculated obtaining the signature took on average 11.2 seconds and the time and money eliminating the quaint practice would save the company $14.3 million each day.

Amazing. 

Remember UPS was in the news a few years ago for developed routing software that eliminated all but 10 percent of left turns after it calculated how crossing against traffic eats into time, fuel and profit.

I bet my wife wishes she’d married UPS. Not to a single driver, but to the whole $65 billion delivery behemoth.

She’s descended from proud Germans, a nationality renown for a fanatical devotion to efficiency, precise engineering and periodic and bloody quests for world domination. 

Me? I’m the descendant of proud Swedes, a nationality known for IKEA, ABBA and those tasty little red candy fish I find impossible to resist, despite knowing what they do to my teeth.

As I ponder mortality, I realize a more logical creature would try to maximize the time he has left, to plan and scheme ways to make the tyrannical clock bend to his will.

I tried thinking like that and so far the only alterations I’ve added to my ways are vows to be less fanatical about the need to floss after every meal and to whenever possible avoid things like math.

Instead, I find myself behaving as I’ve always done only with more awareness of how a carefree life can be so joyful while being simultaneously devoid of any meaningful accomplishment.

I’m still apt to slug the snooze alarm, to linger over lunch and to play an extra 9 holes while the weather’s still pleasant. And I’ll forever be the guy who when he runs into a chum with a bottle of rum will, guaranteed, wind up drinking all night.

It’s just my nature.

Why, just the other night I a made a series of inefficient left turns because I was admiring the way the sun was setting on the golf course at the very moment Van Morrison’s “And It Stoned Me” came on the radio.

Wish you could have been there.

In life, just because you make a lot of right turns doesn’t mean you still can’t somehow go all wrong.

And you wouldn’t want a soulful moment to emerge and feel all left out.


Related …





Tuesday, July 24, 2018

And Latrobe's best hugger is? Notes from my hug-filled week


That so many women are popping up out of nowhere to give me long soulful hugs makes me glad I last week didn’t reveal I have leprosy.

If I’ve learned anything from the past week since I declared I have Parkinson’s Disease it’s that it feels good to tell people you’re not well. They tell you they’re going to pray for you, offer rides and household assistance and just hug the heck out of you.

They’ve hugged me in the bar, on the sidewalk, in the grocery store, the post office — all over the place.

I’m grateful because the human hug can be very therapeutic. Studies show a daily hug can boost immunity, lower stress, increase self-esteem and reduce depression.

All hail the hug!

It can do all that and it can do something even more magical.

The hug can make you horny!

Most human intimacy begins with a simple hug, the most notable exception being the transactional intimacy with your common hooker usually proceeded by the mood-killing question, “So, how much?”

Or so I’m told.

The stormy passions that led to the conception of most of our children begin with loving hugs.

I tried to put all this far, far out of my mind when I was in the plumbing fixtures aisle at the True Value hardware when I was hit with a hug so surprising I nearly dropped my new plunger.

And, oh, what a hug it was.

It was enveloping. It was supple. It was warm. It was enduring.

It was Burt.

I never knew Burt could excel at hugging like that. Belching, yes. Deer-gutting, sure. Hugging, no.

How wrong I was. I’m not using his real name because I don’t want to embarrass him. But for my money Burt’s the best hugger in town. This bear-like man wrapped me up in his arms and literally lifted me off the ground as he whispered soul-stirring encouragement.

I’ve been pleased by the number of my male friends who’ve stepped up for quick manly hugs. Hugs are literally touching. And to have male friends old and new express such encouraging affection really moves me.

See, I live in a part of the nation where many heterosexual men still feel awkward putting their arms around another man in a place where other men might see it.

Places like the hardware store. Get busted hugging there and, guaranteed, you’ll hear three “Brokeback Mountain” jokes before the manly uncoupling.

Maybe it was what he said that made the hug seem so extra special. Because what he said to me is what in these challenging times we all need to hear.

“You’re going to be all right. Stay positive. Don’t give up. We’re all praying for you. If you need anything — anything at all — just let me know. We’ll take care of you.”

Isn’t that beautiful? Feel free to imagine great, big Burt saying those heartfelt words to you with his arms wrapped around your quivering torso.

That’s why I felt so bad that I'd giggled hysterically throughout this whole emotional interlude. It wasn’t I felt awkward or weird.

I’m mature. I’m enlightened. I’m progressive.

But I’m also about a foot shorter than Burt and his beard kept tickling my bald spot.


• Thanks to all of you, my friends, who took time to express concern and encouragement over my diagnosis. If I didn’t respond, I apologize. It was as overwhelming as it was touching.




Tuesday, July 17, 2018

So, okay, I have Parkinson's


How many of you, my friends, are confused by that headline confession? Parkinson’s? Parkinson’s what? Parkinson’s galoshes? Parkinson’s kite? Parkinson’s fruit salad?

No. I have Parkinson’s Disease. So do more than 1 million men mostly and women in America. The average age onset is 60.

I am 55.

I first began noticing the unsettling symptoms in October 2015 when the left side of my body seemed to begin shutting down. My left arm would hang like dead meat at my side. A slight limp began to develop as my left foot disobediently dragged. 

Always a crackerjack typist, crisp keyboard strokes became tentative and at times impossible. The fingers on my left hand refused to obey cranial commands that had until recently been split-second instinctive. 

Doctors couldn’t figure out what was wrong. So on a miserable day in early February I was given the miserable task of having to drive to Pittsburgh’s UPMC Hospital to undergo a $10,000 DAP test that involved injecting me with nuclear isotopes that would circulate throughout my brain.

And on Valentine’s Day, just before lunch, all alone in my shabby little office, I found out in the most graceless way possible I was one of 60,000 Americans each year who learn we have this progressive neurological disorder that in its most severe cases can rob victims of even the most basic motor skills right down to the ability to blink one’s eye.

My grim informant had no time for blow-softening small talk: “Well, your test results came back and are consistent with Parkinson’s Disease. There is no cure.”

I went quiet so long she must have thought I’d either dropped the phone or dropped dead.

“You still there?”

I mumbled confirmation. What could I expect was going to happen?

“Can you still feed yourself?”

I told her I’d managed to down a donut that morning, but that some of the rainbow sprinkles fell on my lap. Will the inability to swallow strike by lunch? 

“Well, you should really talk to the doctor.”

I told her I couldn’t believe the doctor, whom I’ve come to like, would outsource such a sensitive phone call to someone so clearly insensitive.

Even though I’ve known I have it for five months, I’m still remarkably ignorant of what I’m up against. In fact, I hadn’t even typed the word Parkinson’s into a search engine until this morning when I needed to look up the above statistics.

Believing that I’m an individual and that the disease strikes individuals differently, I didn’t want to burden my psyche with blanket fears.

Note: it’s not Parkinson’s Condition, Parkinson’s Malady or Parkinson’s Inconvenience; It’s Parkinson’s Disease. So semantically at least this is some serious shit. Doctors have told me they have patients in their 70s who with treatment display no visible symptoms. They tell me my relative fitness and otherwise sunny disposition mean I’m a good candidate for a rosy eventuality.

But seared into my memory is a conversation with an old neighbor from the street where I was raised. We golf together once a year and a couple of years ago I introduced him to Arnold Palmer. It was the first time I think he looked at me and didn’t see a runny-nosed kid riding his Big Wheel.

I treasure his friendship. 

It was about four years ago he confided in me his sweet wife of 35 years had been diagnosed with Parkinson’s. We talked about it for a compelling 30 minutes and to this day all I remember him saying are two words with dreadful conviction as he drilled me with his eyes.

“It’s horrible … horrible.”

She’s in dire straits — and, no, not the cool one where Mark Knopfler, one of my very favorite performers, sings and plays peerless guitar.

Coincidentally, it was Dire Straits who in 1982 released a song that contains the only mention of any Parkinson I’ve ever heard or known of. It’s on “Industrial Disease,” a catchy number about unregulated factory ailment and what it can do to a man. Pertinent lyrics:

“Dr. Parkinson declared: ‘I’m not surprised to find you here
You’ve got smoker’s cough from smoking, brewer’s droop from drinking beer

I don’t know how you’ve come to get those Bette Davis knees
But worst of all, young man, you’ve got Industrial Disease!’

I wonder if the victim maintains the ability to blink.

In fact, the disease was named for London physician James Parkinson who in 1817 begun groundbreaking research into what since AD 175 had been known as “shaking palsy.”

I don’t yet do much shaking. My left arm — I thank God it’s, so far, not my dominant right side — shakes when it’s cold, when I use it to lift plates into a cupboard or when it’s under stress. Sometimes when I’m nervous and giving a speech it begins to shake so I put my hand in my pocket to conceal the quiver. It’s not a good look, but I wouldn’t want the shaking to distract from what I’m trying to say.

I wonder if in five years I’ll read that last sentence and marvel at my quaint innocence.

“… horrible … horrible.”

Right now the limp is the worst. I walk like a man who looks like a man who with every desperate step appears to be trying to walk like a man.

It’s been an embarrassment for about the last year. People look and wonder, geez, what the hell’s wrong with that guy?

Maybe I should begin to gauge their cool by telling them it’s “Industrial Disease” and see who gets it.

I didn’t want to say anything sooner because I wanted to enjoy the successful release of the Palmer book — a true professional high — and because, being blessed with so many empathetic friends, I knew the news would bum you out.

Man, it’s bummin’ me out, too!

I keep trying to find a silver lining and the only one I can think of is that soon this inability to blink means I’ll be able to really give ‘em all hell in the staring contests.

Why me, I ask.

Did I have this coming? Did I ever make fun of someone with a disability? Is this karma circling back to kick my ass?

Then I remember I stopped believing in karma the day I woke up and incredulously realized Tom Petty is dead and Dick Cheney isn’t.

Could jokes like that be the reason?

I didn’t tell my little darlings, ages 17 and 12, until Sunday afternoon. It was not easy. I love them so much and dread the reality that one of the most difficult aspects of their lives may one day involve caring for me. 

I told them about the symptoms, the treatments and prognosis and said if they ever noticed me stumbling coming home from the bar late at night it wasn’t because Daddy was drunk. It was because Daddy has Parkinson’s.

Amazingly, they bought it.

Well, not Val.

Because of rampant infant mortality, the average life expectancy of a male born in America in 1850 was a measly 38.5 years. And that was before a single Civil War bullet was fired in hostility. 

I think many people view me as youthful or, well, maybe juvenile is a better word.

But, c’mon, 55 is pretty old. Some decrepitude is inevitable.  And for five decades I’ve had a really great body.

And I don’t mean that the way a swimsuit model does.

I had a strapping healthy body for all the meaty years when having a healthy body is a real boon for a young man eager to have raucous fun.

I think about my body and its first 50 years the way many of you feel about that old jalopy you had in college: high mileage, low maintenance. It never needed an oil change, was great in the snow and was nimble enough to parallel park between a Mercedes and a Cadillac with both owners obsessively watching. You’d need two hands to count the number of times you’d run it into the trees and it miraculously seemed like it’d bounced right off without a a scratch.

My body climbed mountains and skied down them. It was agile enough to on the very same night run from police and chase girls. It ate like Elvis, jumped out of planes, wrestled alligators and partied so hard and irresponsibly it birthed drinking legends that endure to this day among sober witnesses.

In many ways, it’s not surprising that a body that’s been through all that is breaking down at 55. What’s surprising is it ever made it past 38.5.

Why me?

Really, with the joyful and rambunctious life I’ve led, it’s fair to ask,  “Why not me?”

For me, the most confounding aspect of all this is professional, a surprise result for someone who since 1992 has wallowed in being utterly unprofessional. But this is not the way this story is supposed to end.

“… horrible … horrible”

I cannot abide an unhappy ending and I don’t intend for this to be one of them. I’m already being diligent about exercise and other recommended behaviors. It’s all a reminder how our  happy little lives can be taken away in the blink of an eye.

But not if we cease to blink!

See, I knew there’d be a silver lining in there somewhere.