Radical Steps- Civilizing Parkinson's Disease through Dance

I do not have happy feet. My feet can be downright surly. Uncooperative. Intransigent. At times they refuse to do the simplest things asked of them.  So I took them dancing.

You're thinking "Pete, as the personification, the very incarnation of raw Alaskan woodsplittin', mountain bikin', frigid temperature toleratin' toughness, what in the world are you doing bellying up to the ballet bar for plie practice?"

Fair question. The answer? If I want to maintain my wood splittin', mountain bikin' etc. I need to control the symptoms of Parkinson's Disease as well as possible, as long as I can. Dealing effectively with PD means keeping up your underlying fitness. Dance is an effective way that this can be done. So says the National Institute of Health:

"Dance may address each of the key areas that have been identified as being important for an exercise program designed for individuals with PD. First, dance is an activity performed to music. The music may serve as an external cue to facilitate movement, thus addressing the first recommended component which is the use of external cues. Dance also involves the teaching of specific movement strategies, which is the second recommended component of a PD-specific exercise program. For example, in Argentine tango participants can be taught a very specific strategy for walking backward. They are taught to keep the trunk over the supporting foot while reaching backward with the other foot, keeping the toe of that rear foot in contact with the floor as it slides back and shifting weight backward over the rear foot only after it is firmly planted. Dance also addresses the third recommended component, balance exercises. Throughout dancing, particularly with a partner, one must control balance dynamically and respond to perturbations within the environment (e.g. being bumped by another couple). In fact, people who have danced habitually over their lives are known to have better balance and less variable gait than non-dancers. Additionally, dance-based balance training has been shown to be successful in improving balance in elderly individuals."
 
We are fortunate in Anchorage to have an instructor specially trained by the Mark Morris Dance Program for Parkinson's, Carolyn Lassiter. I went to one of Carolyn's classes (Offered Tuesdays at the Alaska Dance Theater building, 550 E 33rd Ave in Anchorage, from one until two in the afternoon.) It's free, and to get you in the mood to move, there is live piano music. Class started gently with seated exercises then progressed to slightly more advanced moves while we stood at the bar in case we needed it for balance. As we went through the routines, I felt my body warming up. The pleasure of  moving in rhythm to the music began to take hold. And there was the companionship of the other people who had to work as I did against the limitations imposed by PD. What's not to like about this?

I'll be back to Carol's class. The stakes here are high. The better we maintain our ability to walk, to balance, and to flex our bodies, the less chance we will suffer falls, make trips to the hospital, and run the risks that this implies. Furthermore the closer we can approximate our old "normal" lives, the more we will be able to endure the weight of Parkinson's Disease. And the longer we can keep ourselves going, the more chance we will have to benefit from any new developments in Parkinson's care.

Here is a chance to catch Parkinson's off guard. Our natural tendency is to want to fight Parkinson's Disease. But what if we can charm it with a dance?

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September PD report for Anchorage and environs

Here is the rundown for Anchorage-area PD news as I know it. The Telehealth broadcast will be Monday, Sept 10 in room 2401 at 1:00 p.m. in the Providence oncology wing on Piper St.  Go to
the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. The speaker will be a neurologist named Dr. Britt and his topic will be "Pre-clinical and early clinical manifestations of Parkinson's Disease. "

Our regular meeting will be held on the 15th of September. Our guests will be Betsy Arbelovsky and her assistance dog Sasha. Betsy will talk about the amazing ways Sasha helps her cope with PD. 

And if all that weren't enough, if you want, if you DEMAND more PD activities, look no further than The Alaska Dance Theater (550 E 33rd Ave in Anchorage.) This where the fabulous Carolyn Lassiter will kick off the "Dance for Parkinson's training. That begins Sept. 4, from 1:00 - 2:00 in the afternoon, Carolyn has taken it upon herself to go all the way to New York City to train with the Mark Morris Dance company in their much-praised dance program for people with Parkinson's Disease. Reclaim your right to move! The Anchorage Parkinson's Disease Support Group- We've got your disease!

Pete's Parkinson's Portraits, Bob Hoskins

The British actor Bob Hoskins, who could leap from roles as one of the most menacing tough guys in current film (Mona Lisa) to the anarchic slapstick of "Who Framed Roger Rabbit?" announced he was retiring recently due to Parkinson's Disease.

Aging, Parkinson's, and Me, An Outstanding PD Blog

OK, maybe it's just because I tend to agree with his well reasoned, well-written and level-headed thinking. Be that as it may, John Schappi's blog "Aging, Parkinson's and Me" is finding issues that will be important to any person with Parkinson's Disease, and illuminating them in a way that, frankly, makes me jealous. Where can you find it? Bookmark this. And quickly, before I come to my senses and take this post down to avoid losing visits to Off and On when everyone switches to John's blog.

A "Heart-on-His-Sleeve-Southerner" Does Serious Damage to my Cynical Side

 

Chris Sparks,  (Center), Cartoonist Richard Thompson (R) and me, at a Team Cul de Sac signing at Politics and Prose, a Bethesda bookstore in early July, 2012 

  

I've written before how my job as a political cartoonist pushed me dangerously close to misanthropy. Concentrating, as a cartoonist does for hours each day on incompetents, opportunists, meatheads, and malefactors left me with an opinion of my fellow man that was shading into the red zone of contempt.

Then I got sick and scared. Suddenly a new class of people came into focus. Among this previously invisible group were highly trained and skilled medical professionals, selfless caregivers, and fellow PD sufferers who cope with grace and courage.  And then there are those who, without preparation, suddenly burst into passionate flame as they are confronted with the consequences of Parkinson's disease for someone they care about.

Chris Sparks is a great example. The former comic book store owner from North Carolina is a lover of cartoons. At a comics convention, he met and befriended the singularly gifted cartoonist Richard Thompson. Not long after they struck up their friendship, Chris was devastated to learn that his pal was diagnosed with Parkinson's Disease.

Like many people who learn that a friend is suffering, Chris could not sit quietly and watch someone he cares about be stolen away by sickness. Inspired by Michael J. Fox, he decided to raise money for Parkinson's research. Chris came up with an idea that bordered on madcap poetry. While the rest of the world works to overcome Parkinson's Disease with a commendable grim commitment, staging walks, running marathons, attending meetings and seminars, Chris chose art and humor as his tools.

He decided to create a book in honor of Thompson. The content would be drawings donated by cartoonists featuing their interpretations of Thompson's characters from his celebrated strip, "Cul de Sac". Proceeds from the book and the sale of the artwork at auction would go to the Michael J Fox Foundation to fund PD research.

$45,000 dollars for research and two years later, the whole project looks like a seamless, almost inevitable success. But look inside and you'll see that the entire enterprise depended on the passion and indeed the chutzpah of one man. Cartoonists as a class are deeply centered on their work. To survive in the field, they must be. They do not welcome distraction from the pursuit of the craft they love, they tend to be loners, they don't follow instructions well, and they hate deadlines. This was the group that Chris Sparks boldly chose to bring together.

In fact, when he proposed the book idea to Universal Features, the syndicate that distributes Cul de Sac, Chris had only one cartoonist, Stephen Pastis, committed to the project. Sparks assured the powers that be that other big names from the biz would be on board, and because he is a convincing guy, not only the did powers that be buy in, but a great number of star cartoonists did in fact create work for the project.

Fortunately for Chris, he is not alone in his admiration for the work of Richard Thompson. Spill ink at a gathering of cartoonists and you are bound to stain quite a few Thompson fans. His elegant and carefree line is the sort of thing other cartoonists have no choice but to love. Smart, unassuming, and wry, Thompson the man is beloved as his artwork. Among those that came aboard the project were Pat Oliphant, Lynn Johnston,  Garry Trudeau, and "Calvin and Hobbes" creator Bill Watterson. Watterson gave the project a huge profile boost with his contribution, the first work that most have seen by him since he gave up his acclaimed strip over a decade ago.

Chris was riding the tiger by the time the Watterson painting showed up. Putting a book together is difficult enough with just one author. Multiply the contributors, and you multiply the paperwork, complicate the decisions you must make about how the work will be presented, and, most painful, decide who is in and who is out.

Then there was the auction to organize. I got several emails from Chris that left me with the impression that he was barely clinging to sanity. I was worried enough to check with Thompson about how Chris was taking the pressure. Richard wrote back that "I think he's a heart-on-his-sleeve Southerner who reacts with some emotion to every shift in the weather but is basically ebullient. My Mom was one, and I like that kind."

Reassured, I went back to anticipating the appearance of the book. When it finally came out, it was met with well-deserved praise. The handsome design by Chris and Jamie King, his partner at Sparking Design,  combined with excellent introductory pieces from Thompson, Sparks, and Michael Cavna of the Washington Post set up the collected artwork well. The pages burst with joyous drawing, high spirits, and palpable affection and respect for Thompson.

The success of the project is the result of the work of many hands, as Chris would be the first to insist. But the scope and ambition of effort is the mark of one person who rolled up his sleeves instead of shrugging his shoulders when a friend got sick. It's enough to make a would-be cynic re-think his lousy attitude, and that is a healing that is nearly as momentous as the cure for Parkinson's Disease we so fervently desire.

Blog Bling: "Off and On" Chosen as a "Top Parkinson's Disease Blog for 2012"

As I was wearily slashing my way through my email this morning, trashing the special offers, declining the entreaties from various do-gooder groups and ruthlessly ridding my in-basket of the waxy yellow buildup of content providers clamoring for my limited attention, I came across this: "Healthline editors recently published the final list of their favorite Parkinson's blogs and your blog made the list."  Three cheers and a tiger for me.

What do I know about Healthline? Only that they seem to have discriminating taste in blogs. Their list, which appears here is a good starting place for anyone looking to connect with dependable PD blogs.  Any list begs to be quibbled with, (don't get me started on Rolling Stone leaving Django Reinhardt and Andre Segovia off a list laughably titled "The 100 Greatest Guitarists of All Time) but who am I to argue with people who call me "quirky" and "soulful" and conferred on me this shiny Baubel?

Anchorage Parkinson's Disease Support Group August Meeting

OK, so we didn't have much of a Summer. We can still have our Summer Picnic Potluck, darn it! Are we gonna let a little rain stop us from having a good time? (NO!, NO!!!!!) Are we gonna let a whole lot of rain spoil our Summer  plans? (No!!!! NO!!!!) Will massive downpours dampen our spirits? (NO!!!!!NO!!!!!!!!!!!!!!!!) Well alright then, let's meet at our usual digs at the Pioneer Home (We normally have it at my house, but our place is a total wreck as Pam is recovering from a shattered ankle) August 18, 3:30. I'll bring some fancy Italian Soup, you all bring something else.

 That is all,

Chef Pierre

Caregiving, Celebrating an Unnatural Act

The message left by my friend wasn't good. While I was traveling, back home my wife suffered a freak accident. A large and ebullient puppy had careened into her at maximum speed, shattering her ankle in three places, and dislocating it for good measure.

When I made it back home a week later, I went from being the one who had the problem to being the one who wasn't forced to hop precariously around the house, who didn't have to function through a haze of painkillers, who wasn't dealing with bone fragments scraping against other bones for weeks before the swelling went down enough for a surgeon to safely operate.

Until further notice I am the exclusive errand boy, housekeeper, cook, and chauffeur at our place. I perform these duties with varying degrees of success. Errand boy? No problem, just hop on the bike and go. Housekeeping? I'll get to that at some point. Cooking, in spite of my ummm, unorthodox approach, has actually gone fairly well. I haven't served any rotten meat nor burned the house down. Chauffeur went OK, did the trip from the hospital home without suffering damage or inflicting it. Which, let's face it, is better than many fully able drivers can manage.

Fortunately, family, friends and neighbors have all figured out how precarious our situation is and provided us with companionship, meals, horse care etc. What I've learned from this is successful care-giving can largely be a matter of outsourcing the work to others.

There is a major difference between the light care-giving I am doing and what a caregiver for a person with PD goes through. I fully expect Pam to recover completely, or at least to a level where she can function well within the normal constraints of life. With PD or other progressive and incurable diseases, no matter what heroics the care partner can manage a patient still gets worse. I can only imagine the sad weight this must be to the one who must help manage this decline. By normal standards, you are automatically a failure, the patient is always getting declining. Parkinson's requires another measure of success, one that looks at how much comfort one can render to the patient, and how well you help them sustain their dignity.

This is a difficult job. But it is a deeply human thing to do. One of the many things that separate us from the other animals is the way we say "no" to nature. We have managed, through many slow centuries to soften the blows of the dog-eat-dog natural world in which the weak  succumb to the strong, who themselves naturally weaken as time passes and are taken down in turn. The flip side to the circle of life is the every-bit-as-real circle of death.

This is where we humans prefer to disagree. When one of us begins to lag, we do not leave them to be picked off by predators as one of the sick or the weak. We do not buy the explanation that this is "Good for the herd". Instead we reach for interventions like antibiotics, prosthetic limbs and surgery. These are just a few of the artificial measures we use to hold nature at bay, to hold on to what we hold dear.

The larger community often rallies around this unnatural activity,  providing backup through formal and informal networks. Our bulwark against our frighteningly violent, random and uncaring Universe is caring for one another. (At times we are even willing to extend this circle of concrn to other species as these fishermen do here for a drowning bear cub.)

Our acts of kindness are symbolic acts of rebellion against the cruelty of the natural "order". Viva la revolucion!

August Telehealth Conference

Hi folks, I'm back, here is the lowdown on the next telehealth broadcast. This month, it's Lewy Body Dementia and Parkinson’s Disease, the presenters are Helen Whitworth, MS, BSN and Jim Whitworth, LBDA. The program will take place August 13 at room 2401 at 1:00 p.m. in the Providence oncology wing on Piper St.  Go to the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.


More to come on this month's meeting.

Peter

Playing for Time, Never Enough

It is unforgettable. You are 43 years old. Outside is the cold and dark of January. Inside, in a small examining room you and your wife need answers. You look at the man you wish could give them. "How long have I got before incapacitation?" Your doctor has been expecting this question, but is unable to suppress a momentary look of... Pain? Irritation? He attempts an evasion " I'm always wrong" he says, offering a show of weakness as the ransom for release from our implacable need. Merciless, we press. "Ten, maybe 15 years" he finally says. A quick mental calculation immediately yields a goal. You want to see your son graduate from college in ten years. That time seems impossibly distant. The path is steep and cut with streams that threaten to wash it from beneath your feet. You shoulder your pills, your fears, your responsibilities and your hopes, strike up a dirge and begin the climb. To your great surprise, and with the help of many hands, that day arrives in brilliant sunlight. So you will celebrate. You will celebrate your beautiful son who has graduated with honors in a demanding field. You will celebrate your stalwart partner of over thirty years. You will celebrate the generosity of family members who come to be with you in this moment of reprieve from the inevitability of loss. You will celebrate the vision and discipline of those that worked to make the path smoother and thank them for their passion and compassion. You will celebrate your companions that walk the path, stumbling over roots, cursing as they trip and fall on the rocks, grunting as they rise unsteadily to their feet, stoically moving forward. It is so easy to forget what you are doing or where you are going when exhaustion sets in and gravity seems tripled. It is so easy to lose your way or your hope as sweat stings your eyes and the insects sting your flesh. Chance set you on this road, but chance did not bring you these many miles. So you mark and celebrate this moment with gratitude and gusto. And you will dare to celebrate the next ten years.