Alaska Winter, One-Wheel Drive

After three auto accidents, my friend Lory got rid of her car. "I've given up driving" she said. Her tone of voice was shot through with the resignation that so often accompanies the endless grind of loss imposed by Parkinson's Disease. But I was relieved. "No, Lory" I had to reply, "You gave up crashing".

There comes time for all of us when we should stop driving. I'm 53, which seems young to face this, but with Parkinson's, I am aging precociously. It became clear to me that I had to consider some unpleasant realities about getting behind the wheel of a massive, metal missile.

Unpleasant reality 1: I am now dangerously vulnerable to distraction when driving.  I suspect that this is due to the changes that Parkisnon's causes in the brain's prefrontal cortex that interfere with multitasking. This is especially problematic when I have a passenger aboard. (Side note- the worst driver I ever rode with who wasn't demented, stoned or otherwise chemically incapacitated was my beloved Aunt Jane. Her exploits behind the wheel are legend in my family. I remember several trips through New England I was convinced would be the last for both of us. This summer I remembered that as I drove my son through the woods of New Hampshire. A glance at him in the suicide seat told me he was experiencing the same horror of my driving I felt at my aunt's. "Wiley, it's your birthright to be terrorized by the driving of an elder relative on these roads" I told him. He gave me a wan smile. I gave him the wheel.)

Unpleasant reality 2: Suppose I am involved in an accident? Even if it's not my fault, once it's known that I have a degenerative nerve disease, I have to bet some of the blame will stick to me, even if undeserved.

Unpleasant reality 3: What if it IS my fault? Injury or death of another motorist and/or their passengers is not something I want to live with.  Having already given Wiley the wheel, we decided to give him the rest of our old Subaru, Now we are down to one vehicle, my wife's truck.

With winter here, this leaves me with several options. The first is to never leave the house. This certainly appeals in the deep blackness and cold of mid-winter Anchorage. But it invites cabin fever, and all too often the consequences end up as a grisly story in the paper garnished with shocked comments prefaced by "He was a quiet guy, kept to himself..."  and illustrated by pictures of spent shotgun shells, smashed patrol cars, and hundreds of cats. Clearly that's out.

The bus? Workable, but in Anchorage, lots of work. Taxi? Too expensive. Bicycle? Now we're talking! Flexibility, autonomy, exercise, not likely to kill innocents if I lose control. What's not to like? Oh, that's right- six months of ice, cold, and dark. And don't forget our ever-present friend Parkinson's Disease.

You say it's crazy to imagine a person whose balance is impaired to ride a bike? Tell this guy. I can't explain it, but I know I feel steadier pedaling a bike than walking across a room. I honestly find I concentrate better on where I am going on a bicycle than in a car. There is no division between what I need to pay attention to, and what I want to pay attention to. No music, no passenger in desperate need of instruction from me in the nuances of bare fingers versus picks when playing slide guitar. Just me and the potholes, pedestrians, traffic trolls, and random moose lurking in the shadows. As for the effects of PD and its medications, yes there are considerations. But I have to factor that into anything I do now.

So, what about Cold? There's an old Alaska saying: there's no such thing as bad weather, just bad gear. Most of us have learned by now to layer polypropylene, or smart wool, or stupid wool or what have you. Too hot? Take off a layer? Too cold? Put one on. Winter becomes a long, dark, dance of seven veils! You can even get big mittens called pogies to go over your other big mittens and finally keep your hands warm. There are a variety of warm socks, boots, overboots etc. to keep your toes from frostbite.

Believe it or not, as someone who has lived in the subarctic all my life, I've come to enjoy a cold wind on my cheek, provided I can keep the rest of myself warm. There is a certain pleasure you get when skiing or skating that isn't present in the warmth of summer. Bonus beneft: chances of heat exhaustion are amazingly low. Finally, if it's truly marrow freezing, bone cracking, tooth splintering cold, there is another old Alaska method of coping. Simply stay inside. It won't last forever

As with cold, there are gear fixes for dark and ice. Bike lights of today are far superior to those sickly, weak, and clunky ones from when I was a boy. Now they cast brilliant beams that actually reveal what's ahead. For ice, we now studded tires. What could be cooler than gnarly great knobbies with spikes sticking out of them? Plus you can now get 29-inch gnarly great knobbies with spikes sticking out them, instead of the old standard 26-inch wheels.

Admittedly, all this is not cheap. But consider this: once you dump a car, gas, insurance, and maintenance, quite a bit of change frees up for a nice bike with the requisite cold-weather amenities. So of course, I convinced myself that this was the ticket.

Here is what I can tell you about my "beta version" of Winter biking. So far, I have traveled about 50 miles in relatively mild Winter conditions. Temperatures ranged between the mid-teens and the mid-twenties with light snow on the ground. I avoid darkness as much as possible. The most demanding ride yet was across the East side of town to a 9:00 a.m. appointment with my neurologist. I left in the pre-dawn dark of November and arrived after about seven miles without problems on the way. Most of the trip was on bike trail, minimizing traffic concerns. I did run across one especially cranky traffic troll on the way back home, but the ride was otherwise enjoyable and uneventful. Usually trips are significantly shorter, a two mile round trip to the store is more typical than an epic night ride. I've had one memorable fall so far, pushing too hard on a very steep and rough trail.

 A few points gleaned from my experience stand out. The bike seems to steer a little differently for me in the snow. There is often a slight float which causes me to lean less in my turns. Hence I tend to steer a little wide. Going up hills requires a bit more weight shifted to the rear to enhance traction. Plowing through even light snow does slow progress, but you can still go too fast if you put your mind to it. Curb cuts can be a little tough to find under freshly scattered snow, requiring more than the usual attention when crossing streets. Frigid headwinds are even less enjoyable than normal headwinds. Always pack your pogies (thanks, Yvonne) if you aren't wearing them. One thing I learned about riding in the dark was, even with a bright headlight, it is difficult to see the drivers in their vehicles and make eye contact. All Winter riding, but especially in the dark, demands great alertness and caution.

So far, so good. Experiencing familiar places under new conditions yields fresh impressions. The intimacy that biking brings to places in summer is the same in winter, rewarding the cyclist with glimpses of beauty and moments of connection riding in a car cuts off. It is clear to me that I can't do all my in-town winter travel by bicycle. But there is far more opportunity for winter cycling and its benefits than I suspected.

The Parkinson's Forecast for November, Anchorage and Environs

Hello Mr. and Mrs. Parkinson's and all ships at sea! Here is your PD update for the festive but crepuscular month of November...

The 12th of November will kick off the PD events calendar with a new edition of the telehealth conference at 1:00 p.m.  The speaker: Dr. Daniel Burdick on "Caregiving to the caregivers". Telehealth interactive seminars take place at Providence hospital in their oncology building off 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.

Off and On is excited to report on the following special report: Parkinson’s Disease: An Update, a talk to be given by Ali Samii, MD. Movement Disorder Specialist, Professor of Neurology and Adjunct Professor of Neurological Surgery at the University of Washington and the VA.  Dr. Samii will speak in Anchorage Tuesday, Nov. 13. There will be a 12:30 p.m. Registration followed by the talk from 1:00 p.m. -2:30 p.m. The program will be held at the Sheraton Anchorage, 401 East 6th Avenue Anchorage, AK 99501 (907) 276-8700. Parking and Box Lunches will be provided. Please RSVP to 1-877-229-4532 ext 1035776

Our regular support group meeting will be held Saturday, Nov. 17, 3:30 on the fifth floor of the Anchorage Pioneer home in the West lounge, topic TBA.

Don't forget, every Tuesday at 1:00 p.m, there is a class teaching Dance for People with PD at the Alaska Dance Theater building, 550 E 33rd Ave in Anchorage, from one until two in the afternoon. 

 The Anchorage Parkinson's Disease Support group, "We've got your disease!" 

Scalpel... sponge... white out...

Here is the kind of thing I am delighted to have lived long enough to say, the sort of thing that would have read as nonsense a few short years ago. Frankly, it still looks a little weird when I type it. But here it is: Last Friday, during brain surgery to provide relief from Parkinson's Disease, cartoonist Richard Thompson drew a picture of his brain. (You may see his drawing by going here, and scrolling down.) Naturally, you have many questions about this. As a cartoonist who has undergone this same procedure, I'm here to help. First question?

Q: My God! He drew this WHILE the team had his skull open and his brain exposed????
A: Correct. When the doctors are trying to find the ideal placement of the electrodes in the brain, it is necessary to see how the patient responds to the electric stimulation from the wire, and where the wire is in the brain. Different electrode locations, varying by millimeters, can produce markedly different outcomes. Based in part on the real-time reactions of the patient, they will tweak it to the optimum possible.  So, for this phase of the operation they wake the patient up to assess how they are doing. Richard and his doctors were probably trying out a placement or setting to see how well it worked for drawing. What better way to do this than by actually drawing?
Q: Wait, doctors were putting electrodes in his brain?
A: Yes. The operation is called Deep Brain Stimulation (DBS). For reasons that are poorly understood, many symptoms of Parkinson's Disease can be fairly well controlled in some patients by "stimulation"- zapping certain regions of the brain constantly with mild electric shocks.
Q: Ouch! Doesn't that hurt?
A: No. While the scalp area is plenty sensitive, the brain has no nerves within it that detect pain. Pain is your body's way of telling you that you have a problem that needs addressing. It's like the robot in the old TV show exclaiming "Danger, Will Robinson!" Unfortunately, if something dangerous has made it through your skin, your skull, and past the Blood-brain barrier, you are most likely FUBAR, and pain is useless. So the brain does without it.
Q: Cartoonists have brains?
A: Security, eject that man.
Q: So why did Richard draw a brain?
A: Likely because brains, in all their squiggly moistness, are fun to draw.
Q: This is amazing, and sort of cool.
A: No kidding!
Q: Does this mean that Richard will be able to produce his wonderful loose and confidently masterful drawings and paintings again?
A: I believe so, but it depends to some degree on his tolerance for frustration. The apparatus installed by the doctors must be adjusted to Richard's particular case. His anatomy, the progression of the disease and the way it manifests itself must all be taken into account as the device is tweaked.  This can take months of trial and error, during which symptom control will likely be less dependable than it will eventually become. Fortunately for Richard, he lives near Washington DC, and there are many highly-trained  medical professionals around. But with countless possible settings. finding the perfect mix will take time.

And DBS is not a cure. Parkinson's will always lurk in the background, subdued, but not banished. From time to time it will leap out from the weeds and send his stroke askew. This can be dreadfully demoralizing, especially for a perfectionist like Richard. It can mean doing things again and again to capture the look you want. 

Creativity is all about overcoming limits. Parkinson's is all about imposing limits. My money is on Richard's creativity. I can't wait to see what comes next.

Telehealth Conference for October

Hope to see you on the eigth of October at the monthly telehealth interactive Parkinson's broadcast. We meet at Proidence hospital in their oncology building off 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 topic will be Parkinson's and vision. We will have our regular meeting on the 20th of October at 3:00. I will try to get Betsy to show up with her service dog Sasha. If that falls through, I have a power point from  neurologist-with-PD Dr. Dave Heydrick that we can go over.

Your obedient servant,

Peter

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?

.

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?