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.

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.)

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^*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…“

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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