Another episode of Living with Parkinson’s: In which I regain my voice for a night

October 17, 2024October 17, 2024 / Mark Sloan / 8 Comments

My nephew married a delightful young woman in Montana this past summer. The ceremony was very much a Montana affair: the bride rode down the aisle on horseback (it’s okay — it was outdoors), the flower girls wore matching white cowboy boots, and the officiant did the marrying from beneath the brim of a black Stetson hat.

At the rehearsal dinner the night before the wedding, the bride’s and groom’s friends and family members told stories about the couple. These were the kinds of stories you tend to hear at weddings, from early childhood memories to recent adventures — the kind that tend to grow longer and more convoluted in direct proportion to the number of drinks the speaker has downed prior to grabbing the mic. But, no problem: the stories were sweet and funny and spoke well of the betrothed couple.

I had no intention of telling any stories that evening. There was a time I enjoyed public speaking, a time that followed a decades-long period of hating public speaking. I was a shy kid from a family of shy-ish Irish-American folk not prone to spinning extravagant wedding tales.* My elementary school approach to being forced to speak in public consisted of turning red, staring a hole in the floor, and spluttering my message as quickly and quietly as I could.

Things improved somewhat through high school and college, mainly due to forced repetition, but I can’t say that I actually enjoyed talking to crowds until my book, Birth Day, came out in 2009, and I embarked on a brief publicity tour. My appearances at first were mostly in small, independent bookstores. (Once, in Utah, I spoke to an attentive audience of one.) But then, as interest in Birth Day grew, I was invited to speak to larger groups at meetings and conferences around the U.S. and Canada. As I grew more comfortable with speaking to large groups of strangers, I discovered that I actually enjoyed interacting with an audience. I was a man transformed: my inner “ham” emerged.

I discovered that the key to winning over audiences — and boosting my confidence in the bargain — was to hit them early in the presentation with humor. My go-to Powerpoint icebreaker was a “speaker disclosure” slide that was simply a picture of Dr. Mark “McSteamy” Sloan, the hunky plastic surgeon on the TV show Grey’s Anatomy, with my “disclosure” (“I’m not him…”) typed next to McSteamy’s left bicep.

I’d stand there, deadpan, and wait for the slide to sink in. The crowd would inevitably erupt — this being McSteamy’s early 2010s heyday — and then, when the initial hubbub died down, I’d offer to refund the registration fees of any disappointed Mc Steamy fans, which led to even more hubbing and bubbing. By the time things settled down I had both the audience’s attention and the confidence I needed to talk for an hour about the wonders and oddities of human birth.

My public speaking career hit its peak in 2013, when I was invited to deliver the keynote speech at the Western Australia Rural Health Association conference, the annual gathering of half the continent’s far-flung family doctors, in Perth. Peeking through the curtains offstage, waiting to be introduced, my heart sank. The audience looked pretty tough. Picture a few hundred sunburnt Crocodile Dundees packed into a steeply banked auditorium, backslapping and shouting greetings to colleagues they hadn’t seen in a year or more. It had all the earmarks of an “old home week” reunion, writ large. I suddenly regretted not ditching my McSteamy slide — had they even seen Grey’s Anatomy in the vast isolation of the rural Western outback? Would they stare uncomprehendingly at my strange American pop-cultural reference, hoot me off the stage, and then leave, en masse, in search of cold beer?

But it was way too late to make changes to my slide deck. So, I marched to the podium, shook the hand of the woman who introduced me, and launched into my talk. Up went McSteamy, and just as I’d feared, my wildly popular American slide was met with a wall of what seemed like puzzled Ozzie silence. A few awkward moments passed as I searched for a way to gracefully move ahead. Then, from a seat high up in the back, came a deep, booming voice: “We loove McSteamy!” The place went nuts and I knew I was good to go. Nobody asked for a refund.

I did a few more large-crowd speaking dates after Australia. Things naturally tailed off as readers moved on to other books, other authors. My speaking gigs became centered more on local community events, and teaching pediatrics and writing skills to family medicine residents. Then, a few years later, I began having problems with my voice — hoarseness and coughing, difficulty with enunciation and projection — early symptoms of what would turn out to be Parkinson’s. Speech therapy helped me fight back, but in the end, Parkinson’s robbed me of my public-speaking confidence. My large-crowd grand finale was at my daughter Claire’s wedding a few years ago, at which, in my father-of-the-bride role, I got to roast Claire and her new husband in front of 150 guests. I kept McSteamy out of things; the audience loved it anyway.

So, I had no intention of getting up and speaking at the rehearsal dinner — until I got up and spoke, that is. A few of the stories from friends and family had centered on the intense adolescent rivalry between the groom and his older brother, a rivalry that sometimes spilled over into actual fights. I suddenly recalled a vivid example of one of those near fights, but one that ended with a bit of a twist. Maybe it was a desire to soften the warring-sibs tales a bit, or maybe I just wanted to speak to an audience again, but suddenly — bing, bam, boom — there I was, up front, talking.

Long story short, my tale involved the groom in middle school, his budding high-school football star older brother, and my startled introduction to the “swirly,” defined by the Oxford English Dictionary as “a prank in which a person’s head is immersed in a toilet bowl while it is simultaneously flushed.” (The immersed head in this case being the future groom’s, inserted into the toilet by his brother.) Immediately post-swirly, the swirl-ee broke free of his tormentor, and amidst much bellowing and posturing it seemed that sibling blood might soon be let.

Just as straightforward as it looks…

My brother charged into the ensuing melee — this was obviously not his first offspring police action — and quickly separated his sons. In a scene that looked like something out of Animal House, he sat on the edge of the bathtub between his boys, one smirking to his right and the other, red faced and drippy headed, on his left. They sat in weary silence for a time. Finally, my brother tossed his younger son a towel and sighed. “You may not believe this,” he said, “but someday you two are actually going to love each other.” Twenty-five years later, I said in closing, that day had arrived.

I don’t know how my voice sounded — whether I was loud enough, or spoke too fast, or mushed my words into a congealed lump — and I really didn’t want to know. Some people laughed, some clapped, there were even a few “awww”s. On a warm, breezy Montana evening, eleven years removed from Perth and exactly four years since my diagnosis, I’d been heard, and that was enough.

Footnotes:

* My father was a big fan of wedding-speech concision. He often spoke admiringly of a distant relative, who, in his role as best man at his friend’s wedding, rose to cheer the newlyweds, raised his glass, and — perhaps in a nod to his blood alcohol level — completely forgot his speech. He stood blearily silent for a moment, then slurred/shouted “Ah, what the hell. Happiness forever!” and passed out on the floor. (“Now that,” Dad said, “was a toast.”)

Book review: “Bend, Don’t Break: A Memoir of Endurance,” by Frank O’Mara

July 17, 2024 / Mark Sloan / 5 Comments

Bend, Don’t Break: A Memoir of Endurance, by Frank O’Mara. (The O’Brien Press. April 19, 2024)

Frank O’Mara and I have three things in common: a) we’re both Irish citizens, b) we both competed in track and field in college, and c) we both have Parkinson’s disease.

The commonalities only carry so far, though. Take the issue of Irish citizenship. O’Mara was born and raised in Ireland’s County Limerick; I’m a Midwestern American boy, a product of the “I-states”: Iowa, Indiana, Illinois. He became an Irish citizen at birth, while I claimed Irish citizenship only recently, “through descent.” My maternal grandfather, who emigrated to America in the 1910s, was a Limerick man, like O’Mara, while my maternal grandmother hailed from County Clare, Limerick’s neighbor to the north. The basic difference between us: O’Mara sounds like an Irishman. Me, not so much.

Then there’s the matter of college track (or “athletics” as it’s called in Ireland). O’Mara ran for the University of Arkansas in the 1980s, while I was a shot-putter at Notre Dame several years earlier. He was a key member of a dominant wave of Irish middle-distance runners recruited by American universities in the 1970s, ’80s, and ‘90s (along with Eamonn Coghlan, Sonia O’Sullivan, Marcus O’Sullivan, Ray Flynn, and others). O’Mara went on to win an NCAA title, two World Championship gold medals, and to represent Ireland in three Olympic Games. In 1985, he was part of an all-Irish relay team that broke the world record in the 4 x 1-mile relay – a record that, nearly 40 years later, still stands.

O’Mara, winning the 3000-meter Indoor World Championship gold medal in 1987.

Me? The peak of my collegiate track career was a second-place finish at the Ball State Relays in my sophomore season. (There were no medals; my prize was a too-small tee shirt.) Frustrated by my lack of progress and fed up with spending so much time in dank, windowless weight rooms with sweaty football Goliaths, I retired from shot-putting that spring. But I’ve kept an intense love for all things track and field ever since.

As for Parkinson’s disease (PD) – well, nobody comes out a winner on that one, but of the two of us, I’ve had the easier go by far. I was diagnosed four years ago, at 67, and my difficulties – mainly speech, swallowing, and a clunky gait – are still manageable. I get around without walker, wheelchair, or cane, and I’m fortunate not to have much of a tremor. And since I was an older man when PD came calling, I haven’t missed much that life has to offer. I watched my kids grow into adulthood before I got sick, and I retired from my pediatric career at a time of my own choosing, not prematurely knocked to life’s margins as so many are when PD strikes at an earlier age.

O’Mara’s course, on the other hand, has been nothing short of nightmarish. After being diagnosed with the early-onset variety of PD, his disease progressed rapidly. He soon experienced the worst symptoms that PD can dish out: severe gait disturbances, full-body tremors, excruciating muscle spasms, speech and language difficulties, complications from medications and treatments, and much more. He was sidelined from running, his great passion, and more-or-less forced into retirement from a highly successful career in the wireless communication industry. He writes movingly – and heartbreakingly – of the impact on his close-knit family, of not being able to parent his three sons, Jack, Colin, and Harry, as much, or as long, as he’d have wished. It is O’Mara’s reaction to his plight, though, his refusal to give in to despair – to “break,” as his title suggests – that makes Bend, Don’t Break such a compelling read.

The book opens with a scene familiar to perhaps all of us with PD: the moment when, after months of denial – stubbornly blaming his persistent left leg weakness on a running injury – O’Mara’s unwillingness to accept his diagnosis crumbles when he comes upon his wife, Patty, and an old friend sobbing in their kitchen. “I couldn’t keep reality at bay any longer,” O’Mara writes. “I had early onset Parkinson’s disease at the age of forty-eight.”

O’Mara tells his story in an engaging, non-linear way, weaving the strands of his life – both pre-PD and now with the disease – into a complete picture of the man at all stages of his life. Remarkably, for one who has lost so much to Parkinson’s, O’Mara’s sense of humor seems untouched. He writes with the dry, self-deprecating wit I came to love during my own childhood, spending holidays with my ex-pat Limerick and Clare relatives in Chicago’s vibrant Irish community.

Bend, Don’t Break features a surprising number of funny moments, including one in which O’Mara’s mother buys him a brown, woolen, three-piece suit to wear on the plane for his initial visit to the University of Arkansas, insisting that a nice suit was the key to making a good first impression. Unfortunately, neither young Frank nor his mother understood the oppressiveness of an Arkansas August: “I discovered that brown absorbs heat, and that wool absorbs sweat,” he writes of a layover in Dallas. “Then I encountered the miracle of air conditioning for the first time.” Piece by piece, his suit disappears into his suitcase – replaced by more weather-appropriate attire – until, upon arrival in Little Rock, he sports the under-dressed look of a young man headed for a swimming pool…”[i]f only there was a pool.”

O’Mara (left) and the infamous brown suit, headed for a broiling in Arkansas.

O’Mara’s childhood was marked by two seminal events. The first was his enrollment in an all-boys boarding school – the Dickensian-named St. Munchin’s College¹– at age eleven. It was at St. Munchin’s that O’Mara first learned that he was a fast runner. Pressed into service as a speedy “ringer” by a group of older boys hoping to claim possession of a coveted piece of the College’s recreation area for after-dinner games, O’Mara developed the strategies – pacing, sharp elbows, and avoiding “calamity” in the crowded sections of races – that would serve him well in his grownup running career.

The second formative event of O’Mara’s childhood was the sudden death of his father from a heart attack when O’Mara was fifteen. In a poignant section, the author describes his last communication with his hospitalized father – a hand-scrawled letter in which he promised to win the Irish Schools 1,500-meter title the following year. (“Hope you recover,” he signed off, awkwardly, in the way of teenagers everywhere.)

This was a big promise. O’Mara was coming off a string of average-at-best performances (for him) that left him doubting his abilities. But he took his vow to his late father seriously, and through discipline and stepped-up training reached his goal, winning the Irish Schools championship the following year in impressive form, breaking the old record by more than four seconds.

Much of Bend, Don’t Break is devoted to the mature O’Mara’s two main passions: running and the business world. I particularly enjoyed the behind-the-scenes sections on the international track and field circuit of the 1980s and 90s, back when amateurism was still the rule – if only in name – for Olympians. Fans of business success stories will enjoy, too, the high-stakes tale of O’Mara’s tenure as president and CEO of AllTel – the wireless company that once went toe-to-toe with the likes of Verizon and AT&T. This period of O’Mara’s life overlapped with the onset of his PD symptoms, an untimely coincidence that greatly complicated his business dealings.

And then there’s the often-grueling story of the author’s struggles with Parkinson’s, told in straightforward, clear-eyed prose. O’Mara will never be accused of being a Pollyanna; there is neither false optimism nor self-pity in his telling. His description of his disease may be too blunt for someone newly diagnosed, those whose symptoms are still mild and who may well be in the throes of denial. But as someone who only recently passed from denial to acceptance, I find comfort in hearing someone tell his story like it is, particularly someone who has lost so much, but who still sees the value of living his life moment by moment, day by day, and celebrating what small victories PD allows.

It’s typical for a reviewer to gush a bit when he loves a book, to rave about how the author’s story has inspired in him some sort of life-changing epiphany. I can’t say that Bend, Don’t Break has changed the course of my life – I’ve seen what Parkinson’s disease did to my mother and grandfather, and I know that, barring a miracle cure or a timely heart attack, I’m likely headed down that same path.

But I can say that O’Mara, with his love of life, his un-killable sense of humor, his work ethic (he painstakingly typed every word of his manuscript, one keystroke at a time), and his unflinching description of his struggles with Parkinson’s, has inspired me nonetheless. His acceptance of his physical limitations, his determination to challenge those limits, his unembarrassed embrace of his wide circle of family and friends – and his assertion that without that circle he wouldn’t have survived – have made me see my own situation differently.

I’ve always been the physically strong one, the guy who hoisted the heavy stuff, who helped carry others as their bodies failed. It has been very difficult for me to accept the fact that I’m the one needing help now, whether it’s when I stumble, or mumble, or can’t manage those damnably small cuff buttons by myself. I’ve wasted a lot of time deflecting that help, trying to convince everyone – myself, mainly – that I’m just fine, thanks.

Frank O’Mara learned early in the course of his disease to surround himself with the people who loved him and were willing to help. And he took risks, making plans for an uncertain future and carrying through on those plans, even as he dealt with the daunting symptoms of his disease. (I won’t spoil the book’s ending, but it involves a long, arduous trip and remarkable physical challenges.)

Those are the lessons I’ll take from this marvelous book. My wife and I are planning a European vacation for our 40th anniversary next spring, figuring we’ll deal with any changes in my condition between now and then as they arise, and I’m going to start my looong-delayed second book.² My new mantra: Yes, someday I’ll need a wheelchair, but today is not that day.

And I’ll drop the ‘I’m fine’ act and accept assistance from those around me. Thanks to Frank O’Mara and Bend, Don’t Break, the next time I need help rising from a chair, or un-wedging myself from an overstuffed couch, I’ll gratefully reach out to the hand that’s offered.

_ _ _

Footnote:

St. Munchin (7th cent A.D.), the patron saint of Limerick, is believed to have been the first Bishop of Limerick, although little trace of him can be found in the historical record. He seems to have been a peculiar choice for a patron saint. According to one source, he is renowned for having cursed the citizens of Limerick for not helping him build his church. (Apparently, they forgave him.)
My first (and, so far, only) book, Birth Day: A Pediatrician Explores the Science, the History, and the Wonder of Childbirth (Ballantine Books) was published in 2009. There’s science, history, memoir, and humor, and more about my family members than you may care to know. Got a lot of great reviews, and there’s a Japanese edition if you’re tired of English. You really should buy a copy!

Another episode of “Living with Parkinson’s”: In which I visit the neurologist

January 24, 2024 / Mark Sloan / 6 Comments

Every six months, come rain, shine, earthquake, or wildfire, I go to see Dr. S, my neurologist.(1) This is ostensibly a follow-up visit, or so the honey-voiced appointment clerk tells me, to check on my Parkinson’s “progress.” She says this like I’m recovering from a broken leg, a bad case of hives, or maybe pneumonia—a self-limited medical calamity that’s expected to resolve in time. But Parkinson’s isn’t like that. It’s going to get worse, the only question is how fast. So, twice a year I check in with Dr. S to see whether my Parkinson’s is sticking to the speed limit or engaging in a bit of reckless driving.

Dr. S’s office is a 30-mile freeway trip from our house – down in Marin County, that legendary land of hot tubs, up-upscale shopping malls, and over-the-top estates tucked back in the redwoods. We will see none of that on our visit today, though; Dr. S’s office is a literal stone’s throw from the freeway.

After a half-hour of medium-bad traffic, Elisabeth noses the Kia into the neurology parking lot. For some reason Dr. S’s office shares a building with the county coroner’s office, a rather unsettling relationship I haven’t yet had the courage to explore. We enter the non-coroner side of the building, take our seats in the waiting room, and wait to be called. My health plan offers online check-in these days; this is my first attempt to use the service. As I understand it, having checked in by phone yesterday, all I have to do is sit and wait until, magically, a staff member will appear to take me to my doctor.

The lady at the registration desk notices me, eyeing me a bit suspiciously at first as I skip the line and plop into a chair. Patients come, patients go, while Elisabeth and I catch up on old People magazines. During a registration lull she waves, catches my attention, motions me to her window. “Sir,” she says. “Can I help you?” In my Parkinsonian head the words of explanation are all there, sorting themselves for an orderly exit, but my mouth can’t quite usher them out. I wave my phone in the air and point. “Already done,” I rumble-mumble. “Online.” The lady seems like she’s seen this before. “Let’s make sure about that.” She takes my card, types in my number. “There,” she says with a smile, returning my card. “Now you’re checked in.” I thank her and return to my seat, where Elisabeth waits, eager to update me on Prince Harry’s new life in California.

The door to the patient care area whooshes open. A young medical assistant calls my name. We follow her down the hallway and through the usual rooming-in procedures: weight, blood pressure, an oxygen saturation reading from the little E.T. thingie she clips to my index finger. Then come the questions: Any new allergies? (No.) Do I smoke? (No, for the thousandth time.) How many hours do I exercise a week? (Oodles, I want to say, but instead I throw out an estimate that seems to satisfy her.) Do I feel safe at home? (I shoot Elisabeth a sidelong glance, think for a moment about passing the medical assistant a “Help me!!” note, then think twice and say, “Safe? Sure.”) Her work completed, the assistant smiles sweetly and tells us Dr. S will be right in. And, a few minutes later, there she is.

Dr. S knocks at the door and enters, her hands glistening with freshly applied sanitizer. She is a slender woman with dark, kind eyes, and a warm smile that I only see from time to time – it all depends on the clinic’s Covid masking requirements du jour. Her presence is reassuring; there’s a comforting routine to these appointments.

We start with a bit of chit-chat, announcing the next-springtime arrival of our first grandchild. Dr. S seems genuinely happy for us. She asks about my recent ear surgery ( a minor, and unsuccessful, attempt to fix a eustachian tube problem). I tell her that the ear problem is making it difficult for me to carry on a simple conversation – my voice was soft to begin with, then made softer by Parkinson’s, and now, thanks to the loud vibration of my eardrum when I speak above a certain volume, it’s even worse. “Wow, that sounds like it’s really impacting you,” she says, and I nod. She makes a note to herself. “I’ll get in touch with your surgeon, so he knows how much this is bothering you.” And I know she will. Dr. S is one of the most empathic doctors I know.

She moves on to my Parkinson’s symptoms. Have I fallen since our last visit? Any new tremors? Am I depressed? Sleeping well? How about heartburn? Nausea? Constipation? She doesn’t ask me about seeing or hearing things that aren’t there this time – hallucinations are not uncommon as Parkinson’s advances. Either she assumes I’d tell her, or maybe (probably?) she got sick of my bantering: “But if I can see them, how would I know that they’re not real?” Such a funny guy.

Now comes the neurologic examination, a series of hoops and hurdles designed to see how well my sometimes meandering description of how I’m doing correlates with objective reality.

Dr. S starts with my hands. She tells me to make a modified “okay” sign: thumb and index finger making a flattened “o,” with the other three fingers extended above them. (If you have a flashlight and a wall handy, you’ll see that this makes a passable shadow-animal profile of Wile E. Coyote’s head.)

Sorta-kinda like this guy…

“Okay now, do this,” Dr. S says as she opens and closes her “o” (i.e., Wile E.’s mouth), rapidly tapping her index finger on her thumb. I do that; my Wile E. looks like he’s babbling now. I think I’m doing pretty well, speed-wise, until I look at Dr. S’s shadow animal – the graceful fox from the old Disney movie, The Fox and the Hound, I think – babbling about twice as fast as mine. (Bibibibi versus bah-bah-bah, if you’re taking notes.) She calls a halt to this cartoon standoff a few moments later.

Next, we move on to what I call the “dying-fish-flop” test. (I know it has another, more clinical sounding name, but hey, I’m retired: I’ve already forgotten more medicine than I ever knew.) Dr. S puts her hand on her thigh and flip-flops it back and forth, palm-up/palm-down, and invites me to follow suit. I do, and once again I’m struck by the difference in speed between us. Her fish looks like it has a decent chance of flopping off her lap, out the door, across the hall and back into the river from whence it came. Mine gives a resigned gasp, gazes heavenward, and prepares itself for the grill.

Dr. S runs me through a number of other tests. I touch the tip of her index finger, then my own chest, then back and forth like this until she’s satisfied that my finger won’t wander off willy-nilly and poke me in the eye; I tap my toes on the floor; I cross my arms, Aladdin-like, and stand up from my chair as quickly as possible. There are other parts to the exam – she smacks me a lot with a rubber-tipped hammer, for one thing – but I get exhausted just trying to describe them. Through it all – the Wile E. Coyote, the dying fish, the genie-levitating thing, the hammering and the rest, Dr. S concentrates, her face – or at least her eyes, since she’s still wearing a mask – inscrutable.

“Okay,” she says, when she finally runs out of hoops for my hands and feet to jump through. “Let’s go out in the hallway.” Ha! I know what comes next. She may not seem like the violent type, but I don’t let that placid exterior fool me. As soon as we get out of the exam room, Dr. S is going to try like heck to knock me over. I pull on my shoes (a glacially slow process these days) and follow Dr. S into the hallway. Elisabeth smiles and flashes me a quiet thumbs up.

“Turn and face the wall,” Dr. S says, like a kindly-voiced cop about to cuff a robbery suspect. “I’m going to pull you backwards, hard.” She shows me her outstretched left arm, the one that, she assures me, will catch me if I fall. (A bit of perspective here: I’m tall, with a fair amount of leftover muscle from my athletic youth. Dr. S is eight or ten inches shorter than me and slightly built; I doubt she played football. I’ll know I’m in trouble the day she manages to floor me.) She tugs on my shoulder a few times, but comes up short in our quasi-sumo match. I’m still standing.

We re-enter the exam room; Dr. S returns to her stool while I settle into my chair. She smiles and tells me she’s pleased – I’ve had little disease progression since our last visit. We do a quick review of my plan, make a couple of minor adjustments, and then we say our goodbyes. “See you in six months,” Dr S says. “Bring pictures of that grandbaby!” “Thanks,” I reply with a smile. “I’ll definitely do that.” Someday Dr. S will have to give me bad news; for now, though, I’ll take her “(almost) no news is (pretty much) good news” summary to heart.

Neurology is a much more physical specialty than I realized, what with all the pushing, pulling, and hammer swinging. If, God forbid, Dr. S ever keels over from exertion in the middle of examining me and passes on to that big neurology waiting room in the sky – the one where online check-in actually works – I’ll know just what to tell the inquiring TV reporters as they gather around me for comment.

“At least she was doing what she loved,” I’ll say. (“Which was trying her best to knock me over,” I’ll keep to myself.)

“Dr S” isn’t my neurologist’s real name. Heck, it’s not even her real initial…

Report from the Sonoma Wine Country Games: Battle of the Shot-Put Titans!

June 6, 2023 / Mark Sloan / 10 Comments

Well, that’s quite the eye-grabbing headline, now, isn’t it?

The reality is somewhat more sedate and less bang!/pow! than I may have led you to believe, though. Because, after all, what is senior shot-putting but the solo, semi-leisurely tossing of cannonballs, accompanied by grunting and howling, among grown (often overgrown) men and women? The NBA finals, it’s not. The Olympics? Hardly. On the Spectator Excitement Scale, senior shot-putting is just this side of snail-racing. Except, perhaps, for the competitors’ loved ones, a few dozen of whom gathered last Sunday in the shade of a huge oak tree at the Santa Rosa High School shot-put area in Santa Rosa, California – my home town – to cheer on their elders.

Case in point: Elisabeth Face-Timed our kids and her mom so they could watch my performance live. By the second round of throws, everybody had hung up, with not terribly convincing requests that she send them a video if I won.

I can’t say I blame them. Or Elisabeth, for that matter, for not arm-twisting them into staying on the phone. My poor spouse…there were 22 other guys throwing in the men’s shot put. I was in the second flight, which means she had to sit, wilting devotedly in the heat, through the entire first flight – 15 aged, beefy guys, 90 throws in all – before I ever entered the ring. (“It was bonkers,” she confided later, after driving home with the AC kicked up to “polar vortex.”) She tells me I owe her big for this, and who am I to disagree?

But, hey, I won.

A re-enactment. (Don’t try this at home.)

Okay, truth be told, I didn’t whup all 22 of the others. We were spread over a half-dozen age groupings (the youngest competitor was 50; the oldest, 84), putting shots of different weights (the older you get, the lighter the shot – one of the rarely mentioned benefits of living long enough to watch your body crumble). My group (70-74 years old) consisted of me and two other fellow-graymen: a friendly former coach wearing Velcro braces on his trunk, both knees, and both elbows, and a short-ish man with very long, well-muscled arms and huge, powerful hands. He had clearly not spent the last 40 years trying to coax kids into letting him stick a flashlight into their ears with promises of Hello Kitty stickers.

But I knew I had it won by my third throw, not because I heaved it out of the park, but because one of my competitors – the former coach – had already withdrawn, citing aggravation of an unspecified-but-probably-already-splinted injury. Meanwhile, the man with the big hands was visibly drained by the heat, his distances steadily decreasing with each round. He spent the time between throws in a camp chair with ice packs on both knees and the back of his neck.

And me? Well, my Parkinson’s was on its best behavior that morning. I felt energetic and relatively spry for a change. My balance was okay, but not so much that I dared to attempt a glide – that backward sliding motion that was standard shot-putting technique back in the day. To avoid an unsightly tumble, I just stood there and chucked the thing.

To my surprise, I later learned that I’m currently ranked 24th in the U.S. in my age group, and 5th in California. This sounds pretty impressive until you realize there are only 37 guys ranked nationally in my age group so far this season, which means I’m pulling a C-minus if we’re grading on the curve. (Whatever. I’ll take it.)

I’m going to go out on a limb and guess that I’m #1 in my age group for People with Parkinson’s. Maybe we should have our own Olympics.

A “moving” Moving Day SF

May 12, 2023 / Mark Sloan / 6 Comments

The hour-by-hour weather forecast for the morning of May 6—for Moving Day SF—was pretty typical for San Francisco: Rain, then clouds, then fog, then sunshine, then clouds again, and maybe, just maybe, some more rain. (Windy as heck, too, but mercifully, no blizzards.) Let it be noted that the sun was shining brightly as I made my way up the ramp to the speaker’s podium.

Moving Day SF, a fundraising walk event, was held at Crissy Field, a former U.S. Army air base that lies on the northern edge of San Francisco, just to the east of the Golden Gate Bridge. Standing on its broad, grassy meadow, a visitor can quickly overdose on beauty. In a single sweep of the head, you can take in the Bridge, Alcatraz Island, Angel Island, the town of Sausalito across the waters, and San Francisco Bay itself, which that morning was teeming with sailboats, from the simple to the ungodly. High-tech, state-of-the-art catamarans from the U.S., Australia, Great Britain, Spain, and New Zealand zipped back and forth, preparing for a Sunday, ultra-rich-folk-only competition with a million dollars going to the winner. How they kept from crashing into each other and the many slower-moving boats dotting the Bay, I’m not sure. (As to who won: Don’t know. Don’t care.)

But we weren’t there for the boat races. We were there for Moving Day SF, an annual project of the Parkinson’s Foundation, which brings together members of the Parkinson’s community to celebrate their work on behalf of people living with this disease. This year 300 or so PwPs (people with Parkinson’s), their family members, caregivers, and friends turned out despite the your-guess-is-as-good-as-a-meteorologist’s weather report. They danced, they sang, they played ping-pong (a particular challenge, given the blustery gusts coming in from the ocean), and then they walked, a lot, earning money for Parkinson’s research.

Elisabeth and I were there for a couple of reasons. First, our dance class—from San Francisco Ballet School’s Dance Class for People with Parkinson’s—was scheduled to give a ten-minute demonstration. And secondly, I had been “asked” (read: dragooned^*1) by Cecelia Beam, our dedicated and impossible-to-refuse ballet teacher, to give a five minute talk on my Parkinson’s experiences.

A fine bunch of ballerinas… Me, Cecelia Beam, and Elisabeth.

The dance demonstration was easier than it may sound. For starters, we did it in chairs—there would be no pirouettes or tossing of partners into the air. (Phew!) Even better, when Cecelia planted her chair front row center, I put my chair a couple of rows back, directly in line with hers, so I could see her every move. When the music started, I just did whatever she did, albeit a half-beat late.

We danced our way through three songs: “Mother Nature’s Son,” by the Beatles (lots of sun-worshipping arm stuff); an excerpt from the ballet Romeo and Juliet (emphasis on foot-shuffling and tossing imaginary things into the air); and “Lights,” the 1978 classic-rock standard by the band Journey.^*2 An eclectic mix, to be sure.

Now, there are certain things in this life that reliably get me tearing up. The first is chatting with kids, particularly 3- and 4-year-olds, which I loved to do back before I retired from my pediatric practice. Preschoolers have fascinating views of how the world works, and sometimes novel explanations for why they’re sick or hurt. It’s a heartbreakingly beautiful stage of life.

Another thing is what I call “non-performative acts of kindness.” Anybody can be kind to others if they think they’re going to derive benefit from it—an expected payback, say, or maybe a boost in building a personal “brand.” But when I see someone do something for someone else, without expectation of anything in return…that gets to me.

So, when I looked out from the stage as Journey’s lead singer Steve Perry lit into “Lights,” I saw a remarkable sight: everyone, and I mean everyone, in the audience was locked onto Cecelia, following her lead, moving with us, taking part in a communal celebration of dance. And I thought to myself, These are some of the kindest people in the world.They had turned out on an iffy-weather day to support their loved ones, and each other, and now they were dancing with our group—not because they were expecting something in return, but because they felt a bond with all of us who are dealing with Parkinson’s in one way or another. We were all moving together—and it was, well, moving.

After the dance was over, the emcee—a NASDAQ executive whose father has Parkinson’s—called me up to tell my story. I was a bit nervous—this was my first time talking to a large group of strangers since Parkinson’s had taken a bit of my voice. (I used to love public speaking—after my book was published in 2009, I spoke at a number of conferences in the U.S., Canada, and Australia.) I was soft-spoken to begin with, and between my now even softer soft-spokenness, occasional hoarseness, and tendency to start coughing out of nowhere, the prospect of pulling off even a five-minute speech was a bit daunting. So, in the week leading up to Moving Day, I did extra speech therapy exercises. I wrote and rewrote my talk, marking it up as my speech therapist had suggested, with slashes and dashes—speed bumps to slow me down—and CAPS where emphasis was needed. I read it aloud, over and over, watching for word combinations that might be easily slurred. By the time I stood at the podium, I was sick of my talk—in the past, a sure sign that I was ready to give it.

Long story short, it went well. After a brief sound check with the audience to make sure I had the microphone properly positioned, I plunged ahead with my marked-up script. Not as spontaneous as I would have liked, but everyone heard me, they laughed at the jokes, and applauded at the end. I think they got my message: When Parkinson’s tries to take something away from your life, you look to those kind-hearted people waiting to help, and you adapt. You move on.

(I’ve included a non-marked-up copy of my talk below.)

_____

^*1 The word “dragoon” is derived from the French word “dragon” (the fire-breathing kind). It was also a slang term for a 17^th-century musket, which spit fire from its muzzle when fired. To be “dragooned” came to mean anything forced upon a person—especially non-voluntary military service—by means of firearms. Understand, I’m not saying Cecelia pulled a musket on me. No need: she’s a master in the art of gentle (and persistent) persuasion, although I’m sure she’s capable of breathing fire when necessary. Not wanting to test that theory, I just said ‘yes’ to her invite.

^*2 Oh, come on… don’t pretend you don’t know it! Sing along with me: “When the lights go down in the City / And the sun shines on the bay / Ooh, I wanna be there in my City, oh / Oh, oh, oh…“

_____

MOVING DAY SF – May 6, 2023

GOOD MORNING, EVERYONE!

My name is Mark Sloan, and this is my Parkinson’s story.

I am a third-generation person with Parkinson’s Disease. My grandfather, who came to America from Ireland in the 1910s, was first. My mother, a journalist who raised six boisterous kids, was next. And now, apparently, it’s my turn. This is not the sort of family tradition I’d hoped to carry on—I’d rather it was something like a top-secret Sloan family lasagna recipe—but, well, here I am.

Given my family history, I always knew that Parkinson’s was a possibility. But I had fully expected to be a lucky one, that the disease would pass me by. So, when I received my diagnosis in 2020, I was shocked. I reacted to the news the way I’m sure many people do when first diagnosed: with massive denial. I rationalized and explained away my symptoms. I told myself, Look, you’re taking care of your 99-year-old father—you’re moving slowly because he’s moving slowly! Or this one: It’s not really Parkinson’s – it’s that darn migraine medicine you’ve been taking! And so on. I grasped at straws until, finally, there were no more straws to grasp.

Next, I drew inward. As a pediatrician, I had spent nearly forty years helping parents and kids negotiate all kinds of health issues, from the trivial to the tragic. Now, on the receiving end of a life-changing diagnosis, I initially turned away from those who wanted to help me. I declined well-meaning offers of connections to individuals and support groups that might help me adjust to my new reality. I became sad, a bit moody, and, having watched my mother struggle with the disease, I obsessed on what was to come: Would I lose my voice? Would I lose my ability to walk? Would I lose my ability to think and be creative? And then there was the biggest question of all: Would my life at some point cease to be worth living?

I’d like to say there was a dramatic “Aha!” moment when things turned around, maybe my grandfather’s ghost appearing at the foot of my bed, rattling some chains, and scolding me in his lilting Limerick accent: “Oh, Mark, just snap out of it!” But no. Once it became clear that my Parkinson’s experience wasn’t going to be a rapid collapse, but rather a long-term, slow-rolling decline, I calmed down a bit. I remembered that both my grandfather and my mother had lived into their nineties, living with Parkinson’s for at least a couple of decades. It was time to knock off the self-pity and get serious about this disease.

It was my renewed commitment to exercise that eventually led me to the San Francisco Ballet School’s Dance Class for People with Parkinson’s. To be more accurate, I was dragged to the class—not exactly kicking and screaming, but close—by my wife, Elisabeth, who read about the class at one of my first neurology appointments. To be clear: of the many exercise options recommended for people with Parkinson’s—everything from hiking and biking to tai chi and boxing—ballet was at the very bottom of my list. I’ve always been an awkward dancer at best, and the idea of taking lessons from an actual ballet teacher, at the actual San Francisco Ballet School, in the shadow of the actual Opera House, was intimidating, to say the least. But Elisabeth is nothing if not persistent, and so one Saturday afternoon I found myself reluctantly wading through a sea of tutu-clad ten-year-olds, nervously making my way to the first-floor dance studio in my squeaky-new, size-13 ballet shoes.

What a delightful surprise it was! The veteran dancers in the class, some dancing with their family members, welcomed me warmly. And there at the center of the action, as live piano music accompanied the dancers, was the wonderful Cecelia Beam, ballet teacher extraordinaire. She reassured me that this class wasn’t about execution or perfection—it was about moving. I quickly came to love the class, both for the physical confidence it’s given me, and for the opportunity to socialize with other people with Parkinson’s. There’s even a side benefit: I’ve learned that Parkinson’s Disease is the ideal cover for an awkward dancer; I can blame my stumbles and bumbles on my disease, and not on my natural tendency to crash into things. It’s been great!

So, if I could time-travel to 2020, back to when I was first diagnosed, what advice would I offer myself?

Well, first of all, I’d say don’t waste so much time on denial. Parkinson’s will progress, no matter how much you wish that it would just go away. Next, exercise more, starting right this minute—with any type of exercise you already love. Or maybe try something new, like joining a dance class, at, say, the San Francisco Ballet? Third, get involved—with community activities, research studies, support groups, anything that keeps you motivated and alive in the world. And fourth, accept help when it’s offered. There are so many good-hearted people in the Parkinson’s community; let them help you as you make the most of life with Parkinson’s Disease.

Finally, I’d tell the slightly younger me to stay optimistic. There really is a lot of exciting research on prevention, testing, and treatment right now. And who knows? Gene therapy, or some tool yet to be invented, may someday end up being an actual cure for this disease.

Well, it looks like my five minutes are up. Thank you for coming to Moving Day, and for listening to my story!

Mark Sloan

Happy ‘World Parkinson’s Day’…and the History of James Parkinson, No.2!

April 10, 2023 / Mark Sloan / 2 Comments

“Dr James Parkinson (1755 – 1824)
Born 11 April 1755, James Parkinson is most famous for his essay ‘An Essay on the Shaking Palsy’ in 1817, which first recognised Parkinson’s as a medical condition.”

– James Parkinson’s biography (in its entirety) on the World Parkinson’s Day website

*****

Parkinson’s Europe established World Parkinson’s Day in 1997 to focus the world’s attention on Parkinson’s disease, the people who live with it, and current research in pursuit of better treatments and, ultimately, a cure.

World Parkinson’s Day is celebrated every year on April 11 – James Parkinson’s birthday – and honors the man who put my current diagnosis on the medical map. But to remember Parkinson solely for his eponymous disease (and with a single-sentence biography) would be to shortchange both him and us. He was an immensely talented man, one who exerted considerable influence on late-18^th and early-19^th century British science, politics, and society. With this post, the second of I’m-not-sure-how-many, I continue the story of James Parkinson.

*****

If, shortly before his death in 1824, you had asked James Parkinson to guess which of his life’s many accomplishments would still be celebrated nearly 200 years into the future, he likely would have chosen his research on fossils (of which he was considered a world expert) and geology. In honor of his contributions to the field, Parkinson had a number of fossilized creatures named for him, including the doubly-named ammonite, Parkinsonia parkinsoni. He is rightfully considered one of the founders of scientific paleontology.

Or, he might have picked one of his many medical successes: pioneering work on cardiac resuscitation (he was the first physician to be credited with “bringing back to life someone considered dead”), lightning-strike injuries, hernias*, appendicitis, gout, and a number of infectious diseases, including rabies and typhus.

He might also have chosen his advocacy on behalf of the mentally ill, particularly his reforms of Britain’s “mad-houses,” or his efforts to alleviate some of the era’s many other social ills: child abuse, child labor, and abysmal medical care for the poor.

A best-selling author in Britain and the United States, Parkinson might assume that you’re referring to one of his many books – say, his popular volumes on parenting, medical advice, and other health-related topics; The Chemical Pocket-Book (a chemistry textbook); or his magnum opus, Organic Remains of a Former World – a richly illustrated, three-volume treatise on the identification and interpretation of fossils. Organic Remains drove much of early-19th-century Britain’s “fossil-mania” and inspired the poets Alfred Lord Tennyson, Percy Bysshe Shelley, and Lord Byron.**

“Organic Remains of a Former World” (1804)

Finally, he might have chosen his political activism as the thing people would still be talking about in 2023. A champion of the common man and supporter of the French Revolution, Parkinson was called to testify by British authorities in 1795 in an alleged plot to assassinate the King and was nearly charged with treason himself. Appearing before a suspicious Privy Council – a tribunal that included, among others, the prime minister and attorney general of Great Britain – Parkinson talked his way out of trouble, narrowly escaping a long sentence in one of London’s dismal prisons, deportation to Australia, or even execution.*** His skill and courage in out-debating the Council members, as recorded in the Council transcripts, is remarkable.

Imagine his surprise, then, when you tell him that no, it’s none of those things…the accomplishment for which you’ll be best remembered centuries from now is (drumroll…) Parkinson’s disease! An awkward moment passes. You’d have to excuse his look of bafflement, as he wouldn’t have any idea what you’re talking about. Because, you see, Parkinson’s wasn’t “Parkinson’s” to Parkinson; “his” disease wouldn’t be named for him until a half-century after his death.

The pamphlet he wrote about the disease, titled “An Essay on The Shaking Palsy“, was published in 1817, a few years before he died. It was based on Parkinson’s insightful observations of just six individuals, including three he only saw from time to time, walking through the market near his home. While other physicians had described individual signs and symptoms of the malady – tremors, stooped posture, slowness in moving, and such – Parkinson was the first to recognize that these were all part of a single, slowly progressive neurologic disease. After publishing “An Essay on The Shaking Palsy,” Parkinson tended to downplay his key role in its discovery – to his mind, he hadn’t discovered the cause or a cure, so what was there to crow about?****

Parkinson could be forgiven for not guessing the reason we still celebrate his birthday today. Compared to discovering traces of vanished worlds, writing best sellers, improving medical care for ordinary people, or verbally jousting with a prime minister intent on chopping him into pieces, “The Shaking Palsy” was more footnote than main event. At least that’s how Parkinson might have seen it; to me, the man and his many contributions to humanity are a source of wonder.

So, Happy World Parkinson’s Day! Please give a thought to James Parkinson and his remarkable career on April 11 – his 268th birthday. Then visit the Parkinson’s Foundation, the Michael J. Fox Foundation, the American Parkinson’s Disease Association, the Davis Phinney Foundation, the Parkinson’s Association of Northern California (PANC), or the websites of one of the many other PD advocacy groups to learn how you can help in the fight against Parkinson’s disease!

(Next up in the “History of James Parkinson” series: If we’re going to take the full measure of James Parkinson’s magnificent career, we’ll need to start from the beginning. And that beginning begins in Parkinson’s lifelong hometown of Hoxton, a small village located a mile north of Bishopsgate, one of the medieval entry-points into the city of London…)

_____

*Parkinson’s hernia truss design (1802) is the template for today’s trusses, with only a few modifications.

**Shelley collected Parkinson’s writings; Byron’s poem Don Juan makes reference to Organic Remains; and in the poem, In Memoriam, Tennyson gazes at fossils encased in the walls of a stone quarry and muses: “From scarped cliff and quarried stone/ She cries ‘A thousand types are gone:/ I care for nothing, all shall go… (Kind of bleak, that.)

***The punishment for treason was grisly: the condemned was “hanged, drawn, and quartered,” a brutal form of execution in which the victim was hanged from a gallows, then disemboweled while still alive (drawn), and finally beheaded and dismembered (quartered). (Way bleaker than Tennyson…)

****He’d also be shocked, no doubt, to learn that a cure for Parkinson’s disease still eludes modern science.

Adventures with ChatGPT – or, how (not) to name a blog

March 16, 2023 / Mark Sloan / 7 Comments

Much has been made of late about ChatGPT, the artificial intelligence chatbot that has everyone, from writers and editors, to computer programmers and software engineers, scrambling to understand what it all means for their careers. I’m not worried about losing my job – humans will always do “retiree” better than robots – so my first encounter with the program was one of curiosity rather than fear and loathing.

In my very first post I told the story of how I came to call my blog “A Moving Disorder.” I focused on the subtle difference between “movement” and “moving” in making my final choice. When I read it now, the whole process sounds a bit tweedy and philosophical – I can practically see myself in a comfy chair by a roaring fire, pipe in one hand, brandy snifter in the other, Irish wolfhound (“Rex”) curled at my feet. It was actually a bit messier than that.

Me, thinking big thoughts…

This is where ChatGPT enters the story: Around Christmas, when my son John Patrick, a tech guy, was visiting from Montana, I got stuck on coming up with a name for my blog. I asked him to use ChatGPT to see what title it might create for me. A good son, John Patrick jumped right on it. The following is the lightly edited transcript of Man versus Chatbot:

(John Patrick to ChatGPT): Can you suggest some names for a blog about personal experiences and science behind Parkinson’s? The author’s name is Mark Sloan and it should overall be positive sounding.

(ChatGPT replies): Here are a few suggestions:

“Mark’s Journey with Parkinson’s”
“Parkinson’s Chronicles with Mark Sloan”
“The Science of Parkinson’s with Mark Sloan”
“Finding Strength with Parkinson’s”
“Living Well with Parkinson’s”
“Mark Sloan’s Parkinson’s Journey”
“Navigating Parkinson’s with Mark Sloan”
“Positively Parkinson’s with Mark Sloan”
“Science and Experience with Parkinson’s”
“Living with Parkinson’s, Finding Hope with Mark Sloan”

(JP): Can you suggest some shorter, catchier names?

(CGPT): Here are a few shorter, catchy names:

“Parky with Marky”
“Mark’s Parky Adventures”
“The Funny Side of Parkinson’s”
“Laughing through Parkinson’s”
“Parkinson’s and Chuckles”
“The Chuckle Chronicles”
“Finding Humor in Parkinson’s”
“Laughing at Parkinson’s”
“The Parkinson’s Party”
“Parkinson’s and Laughter”

(JP): “Parky with Marky” – nice one, can you give me a few more ideas similar to that?

(CGPT): Certainly! Here are a few more ideas for a blog about Parkinson’s with a humorous approach:

“Mark Sloan’s Parkinson’s Palooza”
“The Parkinson’s Playground”
“Mark’s Parkinson’s Party”
“The Parkinson’s Punchline”
“Parkinson’s and Laughter with Mark Sloan”
“The Parkinson’s Comedy Club”
“Laughing at Life with Parkinson’s”
“The Parkinson’s Giggle Fest”
“Humor and Healing with Parkinson’s”
“The Parkinson’s Chuckle Zone”

(JP): Ok, can you try with a bit less humor and instead focus on short concise names no longer than “Parky with Marky”?

(CGPT): Certainly! Here are a few shorter, concise names for a blog about Parkinson’s:

“Mark’s Parkinson’s Journey”
“Living with Parkinson’s”
“Parkinson’s and Strength”
“Navigating Parkinson’s”
“Finding Hope with Parkinson’s”
“The Parkinson’s Experience”
“Parkinson’s and Perseverance”
“Overcoming Parkinson’s”
“The Parkinson’s Journey”
“Parkinson’s and Triumph”

(JP): These names are still too long. It’s ok if you use abbreviations or other clever shortcuts

(CGPT): Here are a few shorter names using abbreviations or clever shortcuts:

“Parky with Mark”
“Mark’s Parky Life”
“Parkinson’s Strong”
“Navigating Parky”
“Hope for Parky”
“The Parky Experience”
“Persevering with Parky”
“Overcoming Parky”
“The Parky Journey”
“Triumphing with Parky”

(JP): Thanks!

(CGPT): You’re welcome! I’m glad I could help. Let me know if you have any other questions.

(Me): In the end (i.e., around midnight), it was a tossup between “Parky with Marky” and “Mark Sloan’s Parkinson’s Palooza.” After a good night’s sleep, I went with “A Moving Disorder” (guaranteed chatbot-free).

Family history No.1 – Grandpa Dalton

March 9, 2023 / Mark Sloan / 1 Comment

I should have seen it coming, I guess.

First it was my grandfather – my mother’s father. James Dalton was just out of his teens when he emigrated from County Limerick to Chicago in the mid-1910s. He was a handsome, strapping, farm-grown lad – a touch over six feet tall, with a big chest, broad shoulders, and a face that moved from deadpan to delighted in an instant. He was a talented musician and dancer, and according to my grandmother, caught the eyes of most of the young ladies in Chicago’s bustling Irish community.* She told me this a half-century later, as we sat side by side in metal chairs, fishing for bluegill off a Wisconsin dock. She tilted her head toward Grandpa, dozing in the shade nearby, his hat pushed down over his eyes. “And would you believe it now?” she said with a half-smile.

In my earliest memories of him, Grandpa Dalton would have been in his late 60s, maybe early 70s: impossibly old to my kindergarten-aged self. He moved slowly, a bit bent at the hips, with a serious, even stern look much of the time. He liked to laugh, though. It’s just that sometimes his face didn’t show it.

My grandfather, James Dalton, with his granddaughter (and my cousin), Mary Jo, 1974.

Mary Jo’s pose was spontaneous. My grandmother had died a few days before the photo was taken; Mary Jo noticed her Grandpa was sad and asked him why. This was taken as he explained it all to her.

We visited my grandparents in Chicago a few times a year. We lived five hours away, in southern Indiana, and the sheer amount of parental work involved in moving six kids anywhere, especially on a trip long enough to invite a dozen pee breaks and at least a couple of us throwing up in milk cartons at any one time, limited our visits mostly to holidays.

So, I saw Grandpa in vignettes—mental time-lapse snapshots taken every few months. With each visit he seemed a bit more bent over, his gait slowing, his speech quieting, his face less mobile. On one visit, when I was in mid-high school, Mom mentioned to Grandpa that I was six feet tall now. “He’s as tall as you were when I was a girl,” she said. Grandpa looked me up and down in mock seriousness, as though measuring me. Then he patted the top of his own head, a good half-foot beneath mine. “Sometimes I can’t believe myself,” he said with a resigned sigh.

Grandpa lived with us for a year after my grandmother died. He brought a bag of prescription bottles with him. When I was loading them into the medicine chest I noticed one marked “L-Dopa.” What a weird name for a medicine, I thought. I asked Mom about it and that’s when I first heard of Parkinson’s disease. I’ll admit, I wasn’t very curious about it at the time. All my older Irish relatives seemed to have wobbly gaits, tremors, hearing aids, and canes. I figured Parkinson’s was just another name for getting old.

A heavy smoker, Grandpa was something of a medical miracle. Given his lung disease, Parkinson’s, prostate cancer, and a raft of other medical challenges, he had no business making it to 90 years of age. By the time he died – run over by a car shortly after his 90th birthday party – he was bent forward, his back curved in a near semi-circle, as though, if not for his walker, he would have collapsed forward until his head rested on his knees, giving up his long fight with gravity once and for all.

Grandpa’s body may have failed him, but he died with his spirit intact, singing his songs and telling his stories of Ireland right up until the end.

Next up in “Family History”: Mom’s turn…

—–

*Grandpa played the concertina. His sister, Kit, played the violin, and their parents and siblings pitched in on a number of instruments. Their childhood home in County Limerick was always filled with music; when the children grew up and moved on, a neighbor lamented, “It was all so very quiet… .”

Parkinson’s – one tough disease to explain (No. 1)

March 1, 2023April 12, 2023 / Mark Sloan / Leave a comment

If my blog had a title like “A Broken Leg,” explaining my medical woes would be so much easier. What’s my condition, you ask? Why, it’s right there in the title: I broke my leg. How did I get it? I slipped on a banana peel, maybe, or proved that there is such a thing as “too old to learn to rollerblade.” How do you treat it? You slap a hunk of plaster on it and then wait. What are my chances of complete recovery? Pretty good, if I stop buying Safeway bananas and sell my rollerblades on eBay pronto.

But, no…I had to go and get a disease that can take years to diagnose, is highly variable in its symptoms, and can involve pretty much any body system you’d care to name. The etiology – the medical term for the reason I got it in the first place – can be genetic, or related to toxic exposures, or recurrent head injuries, or some combination of things. Or just bad luck. The treatment is complex, involving an often mystifying array of medications, brain implants, therapies (physical, occupational, speech, psycho), and exercise – everything from ballet, to tai chi, to boxing. The chances of complete recovery? Slim to none. Frankly, I’d rather have a broken leg. Maybe six.

But, hey, this is a Parkinson’s journal, so in upcoming posts in this series I’ll try to explain the medical intricacies…

Not my first rodeo…

March 1, 2023March 1, 2023 / Mark Sloan / Leave a comment

This is my second go-round with blogging. My first blog (boldly, if not very creatively, titled “Mark Sloan M.D.“) ran from 2011 to 2015. I started writing it following the publication of my book, Birth Day: A Pediatrician Explores the Science, the History, and the Wonder of Childbirth, intending it to be an ongoing discussion of childbirth-related issues and child health in general.

Shameless self-promotion…

Alas, the childbirth world is as polarized as anything else these days. On one end of the spectrum are the natural birth advocates, who see birth as a natural event that should be allowed to progress as nature intended; on the other end are the hospital-based birth practitioners, who see birth as potentially dangerous, prone to often unpredictable complications, and the hospital as the safest place to have a baby. The natural birth side views hospital birth as a ticket to interventions (epidurals, c-sections, etc.); the hospital birthers see home birth as unnecessarily risky, and its practitioners as willfully oblivious to the dangers.

Yes, I realize that’s a simplistic view of the state of American birth. The reality is that it’s more of a continuum; I encountered many doctors, midwives and nurses who worked to bridge the gap between sides. In my blog (and in Birth Day) I strove for a reasonable middle ground, sticking to the facts and encouraging women to make educated choices that aligned with their personal beliefs and preferences. From reader feedback I’ve received over time, I’m proud that my blog helped individual women achieve a meaningful birth experience, and that it helped to move some of the discussions along to resolution.

So far, in my limited exposure to PwP World, I don’t see such polarization. Could be that’s the case, or maybe since I’m still a fairly new member, I’m naive to the controversies. I look forward to finding out.

Birth Day: A Pediatrician Explores the Science, the History, and the Wonder of Childbirth, Mark Sloan M.D., Parkinson's disease,