Low Speed Chase: Pursuing Happiness with Parkinson's Disease

Twice in my life, I thought I could never be happy again. The first time as a boy, when I lost my mother to breast cancer. The second was as a man, when I was diagnosed with Parkinson's disease. I was wrong both times. I started thinking about this after running across this James Fallows interview of Gretchen Rubin about happiness.

Happiness seems in some ways like a lightweight virtue, any idiot can be happy. In fact one could argue that you'd have to be an idiot to be happy in such a broken world, a world that contains Parkinson's and many worse things.

But don't sell happiness short. In no less a document than the Declaration of Independence, the "pursuit of happiness" is listed right behind life and liberty as among the primary rights of all people, conferred on them by their maker. (I know, it lists them as the rights of all "men" not "people" but who among us is backward enough to stick to this limited idea of humanity? OK, who besides Jefferson Davis and Justice Scalia?). So happiness, or at least its pursuit, is our God-given right as humans.

Which brings us to the problem. If you are not able to walk, to talk, to even rise from a chair and remain standing how are you supposed to pursue happiness? It's difficult enough to be happy without the attendant woes of PD. Has our God-given right been invalidated? Should we be eligible for a refund for the unused portion of our lives?

Maybe, but don't hold your breath. As Rick says to Ilsa in the classic "Casablanca", "The problems of three people don't amount to a hill of beans in this crazy world". We are small and helpless creatures. In a way, that's comforting. As individuals we are capable only of limited impact, for better or worse. If the world is screwed up, we hold little direct responsibility.

But if our lives are screwed up, there is hope that we can do something about that. Even with PD, this is not the sort of thing that others can do for you. And it's perhaps impossible for some to do it for themselves. But the idea that we all must go through life miserable can't be right. Who can disagree when Tzeitel tells Motel, the nebbish tailor in "Fiddler on the Roof" that "Even a poor tailor deserves some happiness."

How does a person with PD go about being happy? Strangely, social scientists have found that humans seem to have a happiness bias built into our nature. People have been found to be flexible in what constitutes their idea of quality of life. When their circumstances change, they adjust their expectations and think of themselves as happy in previously unacceptable circumstances. Is this delusion? Perhaps. But if it is successful delusion, how can it be argued that these people are unhappy?

Beyond our natural bent to adjust the thermostat of happiness, what can we do? Begin with the realization that while having Parkinson's Disease is bad, there are certainly worse things. (While I have heard the advice to sufferers that it is helpful to realize that there is someone worse-off than you, this seems like a selfish way to find comfort. Basing your happiness on some other poor bastard's unhappiness seems trollish and uncharitable. It's better to think of ways you could be worse off, and probably more compelling to boot.) Mortality can give us focus. Think of your final hours and what you would regret not having done more of. Then start doing more of that.

If you are like me, the primary thing that will emerge as important from the death-bed perspective is building and maintaining social networks. This can be hard to do with PD, but consider this: there is more satisfaction in doing what is difficult. A great deal of your happiness may lie in how successful you have been in the past at doing this as your network of family, friends, and colleagues helps break your fall. But it is never too late to join a support group, and the amount of comfort derived from knowing you are not alone is substantial.

Next, do not let Parkinson's Disease fool you into giving up what you do for fun. I quit riding my bike for a time because I was convinced that my sense of balance was probably impaired by PD. Well guess what. It probably is impaired, but I can still ride just fine. The feeling of freedom it gives me is a liberating joy. And there are ways to adapt your abilities to do the things you love. When my guitar playing began to suffer from my difficulty in coordinating my left hand, I pursued slide guitar, which in some ways simplifies the role of the left hand and allows the PD-afflicted guitarist some satisfaction when playing in the traditional way no longer can. These types of work-arounds, in addition to to the rewards that they bring in and of themselves, afford the additional satisfaction of feeling that you have outmaneuvered Parkinson's in its relentless quest to take everything you value away.

Third, find some way of helping others. This is a formidable way of connecting with other people. Among the obvious ways of helping for those of us who have PD is to contribute to a support group or participate in medical trials. This is one way your illness, instead of disqualifying you, makes you uniquely suited to lending a hand. Unless you are a psychopath this will contribute powerfully to your sense of self-worth. It will also fortify your social network. Two birds, one stone, dude.

Exercise. There are as many reasons to  exercise with pd as there are cells in your body. Exercise can be done as part of a group, which helps us cope with loneliness and feelings of alienation. Exercise enhances positive body chemistry vis-a-vis depression, and may promote the brain's ability to repair itself.

One common destroyer of happiness is clinical depression. Discuss depression with your neurologist if you notice common depression symptoms in yourself. There are established treatments that are effective for most people. It is not necessary for a majority of us to suffer from this "Noonday Demon".

Please remember that nobody is happy all the time. But the fact that you presently may be  unhappy does not mean you will always be sad. And avoid judging yourself or others too harshly if they seem unable to be cheerful and bright. We have a right to pursue happiness, but no guarantee we will actually find it. Still, if even a poor tailor deserves some happiness, surely a Parkinson's sufferer deserves some as well. Don't give up the chase, even in slow motion.  

It's The Little Things...No, Wait... It's Not.

Holiday Hyenas at your heel? Here's a way to Restore More Than Your Seasonal Spirit.

 

As a public service, this blog will lift the holiday stress from your stooped shoulders, bringing merriment and cheer to your desperate and dark season.  Just throw away that list, no need to hunker in line outside the big box outlet in the small hours to fight to the last "Tickle-Me-Elmo".

No more!

There is a better way, a way in which you can do good as you do well by the dear ones on your list.

Here is how. Simply contact Mr. Chris Sparks and order multiple copies of the fabulous Team Cul de Sac tribute to cartoonist with Parkinson's Richard Thompson. For only $35.50, Chris, who organized the project, will inscribe the book for you with his name, hunt up a sturdy box, and mail the book to the address you specify. And what a book, featuring art from Bill Watterson, Gary Trudeau, Lynn Johnston and a heavenly host of heavy hitters from all corners of the cartooning cosmos. For every book you order Mr. Sparks will send $5.00 to the Michael J. Fox foundation. They will put it to the excellent use of humiliating, incapacitating, and finally destroying Parkinson's Disease, burying its shattered corpse under numerous tons of cement and setting wild hyenas loose to patrol the area to ensure that it never again sees the light of day. Now that's what I call the Christmas spirit!

Now you can cross two things off your to-do at once... end Parkinson's and finish your Christmas shopping at the same time! What are you waiting for? (Cue Joseph Spence, singing "Sandy Clor is Coming to Town")

Parkinson's Forecast for December in Anchorage

It's time for us to drive dull care way with festive events and high caloric intake. In order to do our part we will be having our Holiday Potluck for our December meeting. What this means to you: unless you want to feel like a slacker, you will show up at the regular meeting time of 3:30 with something delicious to share with your fellow support group members. We will stave off the cold and dark of the season with the bright light of fellowship. I'll bring something main-dishesque. You bring whatever you think the rest of us would benefit from eating. This happens at the Pioneer Home on the 15th of December.

The Telehealth conference will be the 12th of December at 1:00 p.m.  The speakers: Dr. Carlson, a neurosurgeon and Jamie Mark ARNP on "Is Deep Brain Stimulation an Option?". 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. Hoping to see you at one or both of these events!

Pete out.

Caregiving Teleheath Conference, A Quick Rundown

Finally made it back to a Telehealth conference. These come to us once per month, and are broadcast from a room in Providence hospital that has an interactive interface allowing us to see preseentations from various Doctors, therapists etc. Then we ask them questions. Provided, of course that we can speak loud and clearly enough. Today's session was on caregivng. I took notes because I can't help it, I'm a compulsive note taker. Since I got them, I'll pass them along.

Our presenter, Dr. Dan Burdick, started off by talking about "caregiver burden" which essentially means all the stress they feel that falls to (or on) them due to the fact they are the one primarily responsible for watching over a person with a chronic disease.

Dr. Burdick said that a caregiver's role needn't be burdensome, but that there are a number of factors that tend to make it so. Complications from the patient such as age, disease stage, and depression made things tougher for the caregiver.

Caregivers pointed to things like grocery shopping and transporting their charges as primary contributors to their sense of burden. However the biggest predictor of caregiver burden was depression suffered by the caregiver. Dr. Burdick provided a URL for  people wishing to assess their depression, alas, apparently I copied it down wrong. But don't get all bummed out about it, I found this screener for depression courtesy of the Mayo Clinic.

What can be done to help caregivers bear their loads? Dr. Burdick came up with the mnemonic "EARs", which stands for  Education, Assistance, and Resources.

Education: Learn about PD, its meds and their side effects. Learn how to be a patient advocate. Learn the workarounds for various problems that can be fund through physical and occupational therapy.

Assistance: Build a team of family and friends to pitch in. Find people who will help with shopping or housework. This will help allay another concern, social isolation.

Resources: Support groups (our Anchorage group is fortunate to have a veteran caregiver, Betty Berry to help you with your caregiving questions.) The Northwest Parkinson's foundation has various services to help caregivers including a pamphlet entitled "Who takes care of the Caregivers? Here in Alaska one can also go to the Alaska Department of Health and Social Services for help.

For things a caregiver can do for themselves, Dr. Burdick suggested that caregivers be attuned to their emotional state, and to set aside time for themselves and for social contact. This is not selfish, it's only human. Dr. Burdick said that the people who know how to ask for help, actually last longer than those who just blunder alone along their weary way.

Finally it was noted  that the new roles of "Caregiver" and "patient" become superimposed over the old roles such as husband and wife, parent and child. This can lead to problems as new realities make demands on the old relationship.  One way of coping with this is to keep up  parts of your old roles together- get out for a date or go for a walk.

When the question and answer time came I asked what the patient could do to help keep the caregiver going. One answer: Keep doing the things that are your responsibility as long as you can do them. If you were always the one who made the bed, don't drop this simply because of a diagnosis. If you still can do it, why would you stop? This isn't rocket science, people. Unless you actually ARE a rocket scientist. In which case, continue as long as possible.

    ...

Teleheath Conferences: Telehealth interactive seminars take place at Providence hospital the second Monday of each month, 1:00-2:00 pm 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.

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?

.