Wednesday, October 31, 2012

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.

Saturday, October 27, 2012

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!" 

Sunday, October 14, 2012

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.