In waxing poetic (and at length) in my last post about the weather conditions on Moving Day, I neglected to mention our raison d’être for braving the deluge…fundraising! So, how did our SF Ballet’s Parkinson’s Foundation Fundraising Team – “Shake, Rattle, and Pointe” – do in the total-donations contest?
Well, we were up against more than 40 other teams, and…
(The Parkinson’s Foundation‘s overall Moving Day SF goal was $145,000. They’ve achieved > 95% of that goal so far!)
A big thank you to my friends, relatives, and blog readers for supporting me in raising money for PD research and services, and for donating more than $2000! I appreciate it, and you, very much. Thanks again!!
About a week before this year’s edition of Moving Day SF – the annual Parkinson’s Foundation fundraiser held Saturday, May 4, at Crissy Field in San Francisco – I decided to check out the long-range weather forecast. Last year’s celebration featured a meteorological mixed bag of light rain, fog, cold wind, bright sun, then more fog and cold wind blowing in under the Golden Gate Bridge. I achieved my exercise goals that day just by putting on and peeling off my multi-layers of sweater, vest, windbreaker, and heavy coat, and still ended up half-frozen. I wanted to do a more efficient bit of layer-planning for this year’s event; hence the early weather check.
I wasn’t expecting rain; San Francisco’s last round of wet weather had ended on April 13, and scanning my iPhone’s forecasting app, I saw a week’s worth of sunshine leading up to May 4, and another week of sunshine afterwards. But there on the 4th itself, isolated from all the smiling suns on either side of it, was a lonely dark cloud with raindrops falling from its cartoon underbelly. There was a 65% chance of rain that day, the tiny blue text told me.1
I didn’t worry too much about it at that point. Lots of times those predicted rainstorms don’t materialize. The “% chance” diminishes as the day approaches and finally disappears altogether, the little dark cloud at last swallowed up by yet another inanely smiling sun emoji. I figured that’s what would happen here, too.
But as the day approached, the “% chance” increased steadily, so that by Friday, the day before the event, we were looking at a 95% chance of rain on May 4. It got even worse. Drilling down into the forecast, the heavy Saturday rain was predicted to peak between 9AM and noon – the exact hours of our event.
I read all this on my phone at 5pm on Friday, a hand held to my forehead to shield my eyes from the brilliant sunshine pouring from a beautiful San Francisco sky. As far as I could see – all the way to the Pacific Ocean on the horizon, maybe all the way to Japan – there wasn’t a single cloud in the sky. How could heavy rain be possible within a few hours? Where was it going to come from? Okinawa?
But the weather in San Francisco is prone to change at the drop of the hat that just blew off your head, and change it soon did. By 8pm it was cloudy and misting, around midnight the rain started for real, and by morning the whole city – including Crissy Field, the Moving Day site – was soaked.
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Elisabeth and I rose bright and early to the sound of rain blowing against our apartment windows. There was no question of Moving Day being canceled, though; a series of pleading emails from the event organizers reminded us that things were going to go ahead as planned, come rain or shine. Message received, we dressed in weather-appropriate gear: for me, a SF Ballet shirt, a light sweater, then a heavier sweater and a wool vest, topped off finally by a new-ish rain jacket. Elisabeth wore a variation of my outfit, including a matching rain jacket. We looked like a pair of eggplants.
Eggplants…
Our original plan had been to walk to Crissy Field from our apartment in the Presidio with our good friends, Pauline and Tom (who had hydroplaned the 50 miles from their home in Santa Rosa that morning to cheer us on), up over the south end of the Golden Gate Bridge, and down a steep set of steps to meet up with our SF Ballet team (a.k.a. “Shake, Rattle and Pointe”). It’s normally about a 45-minute walk, but, figuring it would take about twice as long, given the weather (and maybe even longer, as we would likely have been blown off the bridge and right into the Bay), we opted to get there old-school style. We drove.
We arrived at the SF Ballet tent right on time. Team members and volunteers had been trickling in over the last hour; you could tell how long a given individual had been there by how closely they resembled a corpse. Recent arrivals still had some pink in their cheeks; earlier unfortunates were pale, blue-lipped and stiff-jawed. Only their teeth-chattering shivers gave them away as still being among the living.
And there in the middle of the tent area, rallying the troops with donut holes and hot coffee, was our unsinkable teacher, Cecelia Beam. (She brought the pastries; the coffee was begged from the Rock Steady boxers next door.) I’ve written about Cecelia and all that she means to those of us with PD in past posts (here and here). Suffice it to say, only Cecelia could stand there, drenched to the bone, water pouring from the brim of her yellow bucket hat, and say, “Isn’t this a great day??” with such heartfelt enthusiasm that, by God, you’d swear cinematic beams of sunshine were right that moment breaking through the clouds. (They most decidedly weren’t.)
A number of our SF Ballet classmates had braved the weather to be there, too. We were scheduled to do a chair-dance demonstration, showing prospective future classmates what our class is like. We had rehearsed our dance numbers over the past few weeks, and Cecelia was counting on us. We weren’t about to let a little firehose-caliber downpour stop our show.
After much slopping and slogging about, trying (and failing) to find a bit of dryness somewhere, a garbled microphone voice at last called for our attention: as promised in all those frantic admin emails, the festivities would be starting precisely on schedule. Shake, Rattle and Pointe would be performing third. (I don’t remember who went first or second; I couldn’t feel my feet.) When our moment finally arrived, Cecelia waved us toward the stage. Surveying her tired, huddled, frozen mass of a team, she called to us, her hands held megaphone-style, through the squall. “Whatever you do, look like you’re having fun,” she cried. “We don’t want to scare off any potential new dancers!” 2
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I should mention here that the stage, in this case, was just a modestly raised platform, a roughly 15-by-18 foot extension of the tent under which the DJ was keeping as dry as a DJ can, given the rain coming in horizontal bursts as well as by straight down deluge. Elisabeth and I took our seats in the last row of chairs on the stage – edge-of-the-tent positions that kept our heads out of the rain, while leaving our legs unprotected. I chose my spot strategically: I wanted a chair with a direct visual line to Cecelia, so I could do whatever she did when the music started, and no direct visual line to the audience, so I could chair-dance in peace, unencumbered by fear of public guffawing. Judging from the accompanying photo, it looks like I succeeded…
Where’s Mark? 3
We soon discovered that we weren’t as clever as we’d thought, seating-wise. While it was true that our heads were more or less protected from the downpour by the edge of the tent, our legs were still outside of it, getting rained on. We also hadn’t taken into account that the rainwater up on the roof had to go somewhere, and that, as the tent had no downspouts, the water would simply accumulate, reservoir-like, until the tent roof at last exceeded its capacity, breached its levee, and dumped what felt like gallons of ice water into our laps. This drench-pause-drench cycle continued throughout our time onstage, with alarming frequency and breath-taking force. We thought about moving, but by then the performance had already begun – meaning we would have had to shove the people in front of us off the stage and steal their chairs, something of a no-no in the ballet world – and anyway, we couldn’t get any wetter or colder than we already were, so what was the point? We endured the periodic aqua-dumpings, succumbed to a bad case of the “kids-being-naughty-in-church” giggles and soldiered on.
Our first number consisted of a series of basic ballet moves, adapted for chair dancing. We did tendus, ronds de jambe, and ronds de jambe en dehors with our pointed toes, and some graceful fluffy stuff with our arms, to the song “Don’t Worry About a Thing,” by the noted Jamaican ballet choreographer, Bob Marley. We followed this with two excerpts from Swan Lake: the Big Swan Dance, followed by the Little Swan Dance. (I could be getting the names wrong – they probably sound cooler in French, anyway.) The Big Swan Dance came first, with dramatic swoops and little feathery hand flutters powered by what Cecelia referred to as our “swan arms”: elbows leading on the upswing until wrists nearly touched overhead, then down slowly. Repeat over and over until all the Big Birds have flown away. (All of us flying together was a lovely sight, and would have been lovelier still, had we each had a bit more room to move about onstage than your average corporate-farmed chicken. Picture a lot of colliding elbows… ) The Little Swan dance came next, and was the most fun of the three for me – we got to “march” in our chairs, turn our heads sharply up and around like tiny birds, march some more, tilt our heads from side to side, make nine final marching steps and then finish with a big “ta-daa!” move to wow the crowd.4
Through it all, Cecelia was her usual inviting self, urging the crowd to dance with us, and dance they did. At one point there were several dozen people, many of them swathed in the clear rain parkas handed out by the event staff, swaying, taking their cues from Cecelia, trying out their own swan arms. They looked like a bunch of soaked, happy, shrink-wrapped humans.
When our performance was done, we all hung around in the gale rather than seek higher ground, because we knew what was coming next. Cecelia was called back to the stage to receive an award from the Parkinson’s Foundation, well-deserved recognition for all that she’s done, through her love of dance and teaching, for people with Parkinson’s. I can safely say there wasn’t a dry eye in the house, because by this point in the festivities there wasn’t a dry anything in the house. Once the congratulatory hubbub subsided (we would have carried her off the field on our shoulders, if our shoulders were still capable of that sort of thing) everybody climbed into the nearest rubber raft and paddled for shore.
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I’m writing this on May 11, one week after Moving Day. I’ve since learned that May 4 was the wettest May day in San Francisco in nearly 30 years. The total – an inch and a half or so – may not sound too impressive to those of you who live in parts of the world where total rainfall is spread more evenly throughout the year. But here in the Bay area, where May typically marks the beginning of the dry season – we may see no more rain at all until autumn – May 4 was a rare, monsoon-like event. Add in that the bulk of the rain fell within just a few hours, half of it blown in sideways on 40mph winds, and you can maybe understand why this was a big deal for us.
It hasn’t rained a drop since Saturday (in fact, the clouds dispersed and the sun broke through later that same afternoon), and from the looks of the extended forecast, it isn’t going to rain for at least the next ten days, and probably longer. The downpour on Moving Day, then, centered as it was on our Bird Dances, may well turn out to be San Francisco’s only appreciable rainfall between mid-April and Labor Day. Maybe even Halloween.
In other words, Mother Nature has it in for Moving Day SF. So, lesson learned. Next year, I’m packing a suitcase full of all-weather gear: wool sweaters, a vest, jackets (heavy and light), a rain jacket (and rain pants this time), an ice axe, a furry hat with ear flaps, a hardhat to deflect golf-ball sized hail, hip-waders, a set of battery-powered hand warmers, and, just in case Mom throws us a curveball, shorts, a tee shirt, flip flops, maybe a pair of swimming trunks, and a tube of sunscreen. Then I’ll strap the whole thing to a dogsled. Because, hey – when it comes to San Francisco weather in early May, you just never know.
(In case you think I was making stuff up…)
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Footnotes:
I’ve never been clear on what a “65% chance of precipitation” actually means. Is it that that there’s a 65% chance that rain will fall somewhere within the city limits on that day? A 65% chance that the whole city will get wet? A 65% chance that raindrops will fall on my head? And how much rain are we talking about? Is the mere spitting of a few drops on my windshield enough, or does it need to be a Texas-sized gully-washer? Any weather-people reading this – can you explain it to me? Please?
Note to prospective dance recruits: With the exception of Moving Day, our class is held indoors, in the dry and cozy confines of the SF Ballet School (and chair-dancing is optional; we do center floor and barre work as well). We’re not “Flash Dance,” people.
I’m the ominous, eggplant-hooded shadow lurking at the back of the second row from left.
I’m not, and never will be mistaken for, a dance writer…
Next Saturday, May 4th, will be my third Moving Day SF as a PwP (Person with Parkinson’s), and my second time attending Moving Day festivities at Crissy Field in San Francisco. Moving Day is the annual fundraiser for the Parkinson’s Foundation (PF), a national organization that funds research and provides educational resources for Parkinson’s disease patients and their caregivers. The PF website is a great place to access information on all things Parkinson’s.
As most of you know, I greatly enjoy participating in a weekly Dance Class for People with Parkinson’s group at the San Francisco Ballet School, made possible by funding from the Parkinson Foundation. This funding allows the class to be free for anyone with Parkinson’s and their family members.
This year our Dance Class team (a.k.a., “Shake, Rattle, and Pointe”) will again have a booth—complete with tutus for trying on—from which we hope not to get blown across San Francisco Bay. (Last year was really windy!) As an added attraction, our class will also be doing a brief dance demonstration.
That’s right, I’ll be dancing on stage…but no need to worry for my safety! Nobody’s expecting me to do a pirouette or toss a partner in the air. We perform from chairs, which is just fine with me. We’ll be doing a couple of short excerpts from Swan Lake (seriously), and another one set to a tune by that famed ballet choreographer… Bob Marley.
After the program ends, we’ll go on a fundraising walk, and if you think I’m leading up to begging for donations… you’re right!
So, if you’re feeling charitable or downright philanthropic (and if you’re not, that’s okay, too), here’s how to donate:
1) Click on this link to visit our team page (we’re “Shake, Rattle and Pointe”):
2) Ignore the “Log In” button. Scroll down to the ‘Team Roster’ and click the ‘Donate’ button next to my name.
3) Follow the prompts on the ‘Donate’ page. (Donations are tax deductible.)
4) Accept my undying gratitude…
Finally, I’m including one attachment from last year’s event:
· A video of the brief speech I gave about my Parkinson’s journey (see link to my blog below to learn how this came about):
…and a link to the blog post I wrote after last year’s Moving Day. The post includes a copy of the text of my speech (in case my video uploading skills are faulty…)
It sounds a bit trite, but it’s true nonetheless: the best type of exercise when you’ve got PD is any kind of exercise you’ll actually do. Fortunately, just as Parkinson’s disease presents in a wide variety of ways, there is a wide, wide range of exercise types that can help you manage your Parkinson’s symptoms. Surely you can find something you like?
A great place to start is with Make Your Move, a reader-friendly, thoroughly researched publication of the Michael J. Fox Foundation. (See ‘Selected Resources’ list at bottom for additional links.) With clear text and inspiring first-person stories, Make Your Move can get you started on a personalized exercise path to taking control of your symptoms.
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A picture is worth 1,000 words (even if the somewhat wordy graphic from the American College of Sports Medicine below already looks to have 999 or so…):
My motivation to exercise is pretty straightforward: On days that I exercise I feel more alert and engaged with the world. Sometimes I even feel like my old self (well, almost). And I sleep better, too, which gives me a big boost the following day.
Here’s my own (idealized) exercise regimen, adhered to as strictly as time, energy, and willingness on a given day allow:
Aerobic activity: Lots of walking and run-walking, aiming for 10,000 steps (+/- 4 miles) a few times a week. When weather and/or failing old-guy joints intervene, I supplement with an exercise bike.
Strength training: I usually lift weights twice a week at a health club. (I’m still fairly strong for an old coot, but that “fairly” is a pretty big qualifier…). I rotate upper and lower body exercises, and move quickly enough through my reps that my heart rate sometimes gets up into the high-intensity range. I keep lobbying my neurologist to let me count this as an aerobic activity, too, but she’s not budging. (“I know you love your weightlifting, Mark, but…no.“)
Balance, Agility & Multitasking: I cannot praise boxing, specifically the Rock Steady Boxing program, enough. It combines agility and balance with the joy of shouting at, and whupping the tar out of, a boxing bag. (Bonus feature: you don’t actually have to get hit.) Seriously, if you have PD and can find a Rock Steady program near you, sign up! I have similar praise for dance, specifically ballet, which I do once a week, and of which I have waxed poetic in past posts.
Stretching: Lordy, I’d love to stretch less often! I have problems with restless leg syndrome, which on bad nights can wake me up a half dozen times; stretching helps temporarily alleviate the weird, heebie-jeebie sensations that come with RLS. So, yes…I stretch.
Okay, up and at ’em! Hopefully this information will help get you started on a sustainable exercise program. And if (more like when) you fall off the exercise wagon, climb back on as soon as you’re able. Your Parkinson’s isn’t going anywhere!
“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.”
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, onewho exerted considerable influence on late-18th and early-19th 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.
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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 Remainsof 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.
(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…)
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*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 Juanmakes 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.