Saturday, December 29, 2012

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.  

Friday, November 30, 2012

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")

Thursday, November 29, 2012

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.

Monday, November 12, 2012

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.

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.

Friday, September 28, 2012

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,


Monday, September 24, 2012

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?


Thursday, August 30, 2012

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!

Saturday, August 18, 2012

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.

Thursday, August 16, 2012

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.

Friday, August 10, 2012

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.

Tuesday, August 7, 2012

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?
parkinsons blogs

Monday, August 6, 2012

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

Saturday, August 4, 2012

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!

Sunday, July 29, 2012

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.

Tuesday, June 12, 2012

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.

Monday, May 28, 2012

Team Cul de Sac: Laughing at Parkinson's Disease, Raising Money for the MJ Fox Foundation

It's finally time to turn hype into hope. I've been nattering on for a year now about the terrific Team Cul de Sac cartoonist's project to raise money to fight Parkinson's Disease. June is shaping up to be a Team Cul de Sac-apalooza. The effort, organized by Chris Sparks, has two fronts, a book, and an auction. The book, filled with tribute drawings to the cartoonist's cartoonist, Richard Thompson, is is due for release June 5th, and the on-line auction of the cartoons is now open!

Participating cartoonists include Bill Watterson, Pat Oliphant, G.B. Trudeau, Jim Davis and a bunch of other  top-flight talents. (immodesty compels me to admit that my contribution appears above, and you can bid on it right here) If you ever wanted to own work by your favorite cartoonist, if you ever thought it was time to give money to aid Parkinson's research, if you are delighted with the idea of taking on such a bitter, nasty foe and bringing it down with art and humor, now is your chance. What are you waiting for? (Cue "Chariots of Fire theme"...)

Thursday, May 17, 2012

The Choice: Subsist in the Woods on Beetles, or Follow These Computer Tips for People With PD

Just when you're fed up with your email in-basket, ready to ditch your computer, and retreat deep into the woods to live on beetles and brown roots, something useful turns up.  I was shocked recently by a note containing what seems to be simple and practical ways to make using your Windows-operated computer easier if you have Parkinson's Disease. The item in question comes from Data Driven Health which, in spite of its name, seems to be run by humans,  for humans. I'm including the entire item here because it appears sensible, and so you can get a feel for what they plan to offer in this new weekly email feature called "PD 5".  If you wish to subscribe go to this link. Here is their message...

Welcome to our first "PD 5" quick note! Each Tuesday, you'll receive a fast and easy tip sheet with 5 suggestions to make your life easier. This week, I have 5 tips to make your computer more accessible.
Thanks for being a valued subscriber. I hope you enjoy this new feature!


PD 5- Tips to Make Your Computer Accessible - Microsoft Edition
1. If your tremor is causing you to make unintended additional keystrokes, Microsoft Filter Keys can help.  Go to Start, Control Panel, Ease of Access, then click Make the Keyboard Easier. You will find 6 excellent accommodations there, but for tremor choose "Turn on Filter Keys."  This option allows Windows to ignore keystrokes that occur in rapid succession, or keystrokes that are held down for several seconds unintentionally.  If you have a tremor, this app will truly help.
2. Is your screen difficult to see? Are text and objects indistinct?  You can change your monitor display settings to increase the size of icons or text. You can also customize colors displayed on the screen to make things easier to see. To change the text size without changing your monitor resolution (which will make things fuzzy) go to Start, Control Panel, Appearance. Select adjust screen resolution and choose 150%.
3. If images seem indistinct or fuzzy, changing your background or text colors can make a huge difference.  Go to Start, Control Panel, Resolution.  Chose Change Theme, and scroll through your options until you find the combination of colors and contrast that work best for you.
4.If images are still too difficult to see, Narrator in Windows can help by converting text and captions to speech.  To have text read aloud;  Start, find the search box, and type in Narrator.  There are many options there, and you may want to turn on some of the other Ease of Access apps to streamline the process.
5. Windows also has Windows Speech Recognition which will write email and documents by speaking commands rather than using the keyboard and mouse.  To use Speech Recognition go to Start, All Programs, Accessories, Ease of Access, Windows Speech Recognition.  Say "start listening" or click the microphone button.

Monday, May 7, 2012

Parkinson's Activity for the Anchorage Area for the Manic Month of May

Though April showers may come your waaaaay, they bring the snowdrifts that melt in Maaaaaaaaaaay. We hope. But while you're waiting for those drifts to depart, here's your PD events for May, as I know them.

This month's Telehealth Conference will be on voice amplifiers and memory assistive devices!  How much more 21st Century can you get than that, I ask you? Find this event Monday May 14 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.

Next up there is a special program on Deep Bran Stimulation May 17, Medtronic and Swedish Hospital are teaming up to do a blockbuster presentation on Deep Brain Stimulation (DBS). DBS is a surgical procedure that can have significantly beneficial results for people with Parkinson's Disease as well as other brain maladies, including essential tremor and depression. The presentation will be called Diagnosis, Management and Surgical Therapies for Essential Tremor, Parkinson's Disease and Dystonia. Speakers will include

•Jennifer Witt, MD Medical Director, Division of Movement Disorders, Swedish Neuroscience Specialists

•Peter Nora, MD Medical Director, DBS Program, Swedish Neuroscience Specialists

•Peggy O'Neil Shortt, ARNP DBS Program Manager, Swedish Neuroscience Specialists
The event is to take place Thursday, May 17, 2012, 11:00 a.m. – 2:00 p.m. Registration opens at 10:30 a.m.

It will be held at
Anchorage Senior Center
1300 East 19th Avenue
Anchorage, Alaska 99501

*Pre-registration is required for this FREE event. Lunch is provided.

To register, please contact Keely Dailey:
425-213-2147 or
Bring your best DBS questions. These people have been at this for some time now, and should have answers.

But that's not all! We will have our regular meeting on the 19th. Topic: Tai Chi, which has been  in the spotlight a great deal recently in regards to the help it offers people with balance. Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.

I hope to see some or all f you at some or all of these events!



Saturday, April 28, 2012

Assistance Dogs, For When Mere Obedience is Not Enough

Dogs made the spectacularly successful decision to partner up with humans so long ago we have only myths and legends to describe the origins of this ancient bond. They now live with us in every region of the globe. Some earn their way through hard and dangerous work, sniffing out bombs or guarding livestock. Others win our affection through their sheer charisma, and are awarded lifetime benefits including lodging, board and a decent medical package.

They depend on us, and are great students of the human race, exquisitely attuned and responsive to the small and unconscious signals that we send. In some ways they know us better than we know ourselves. It's a survival skill that works both to their advantage, and to ours.

The phenomenal canine ability to read humans has opened the way for a new role for dogs as service animals for people with disabilities. This afternoon I got to watch a magnificent coppery-coated Golden Retriever named Stan (above) show what he could do. Drop your pencil? Stan will pick it up and put it in your hand. TV remote out of reach? Stan is all over that. He'll find it and deliver it to where you sit. Your change fell in the snow? Stan can recover it, and will drop it in a bucket for you. Dogs are used to assist everyone from MS patients to victims of Post Traumatic Stress Disorder, whom they will awaken from a nightmare. All of which is impressive, but we ask of them even more demanding behavior. We ask them to use their judgement to challenge us when we are headed for trouble.
These dogs are reared for "intelligent disobedience" They know us so well that they will resist and even obstruct us when we are unaware of imminent harm. According to the trainers from Alaska Assistance Dogs, canines can tell when a diabetic is experiencing dangerous levels of sugar in the bloodstream and will insist that their charge pay attention to the problem. A friend in Kenai who suffers from Parkinson's told me that her assistance dog can sense when she has a fall coming and will do its best to dissuade her from walking. She reports that when she doesn't pay heed she soon regrets it when down she goes.

This of course requires the human involved to pay attention, evaluate the situation, and decide whether the dog has a point. Then admit that Fido is right and that they are wrong. Ouch.

Are dogs really that smart? Smarter at times than humans? Let me answer that question with a question. When was the last time when Timmy had to save Lassie from falling down a well?

Tuesday, April 10, 2012

Parkinson's and creativity: What Choice do You Have?

Not long ago there was a burst of items on the Web reporting a link between the start of dopamine therapy for Parkinon's Disease and a flowering of creative energy. This interested me because of the "creative roll" that I have been on since my diagnosis ten years ago.

As this streak continued to unfold I began to wonder if it was an artifact of the treatment. If so, was the treatment merely bringing me up to my baseline creativity, or was I being "artificially enhanced", like a ballplayer hopped up on steroids? I worried and wondered for awhile, and then it hit me: What difference does it make? What is important is what you can and do accomplish. The other stuff just isn't measurable.

Parkinson's is at work in our bodies long before the first tremor betrays its presence. When that first tremor does show, it means that 70-80% of the dopamine-brewing cells in your substantia nigra are no longer in the dopamine manufacturing biz. The fact that one can skate so long with such impairment is truly amazing, and I have grown to find it comforting. But again I pondered, what had Parkinson's stolen from me before we caught it red-handed? It is the inverse of the first question, and just as useless to worry over.

Parkinson's Disease itself is fiendishly creative. It reshapes personalities, habits and even physical characteristics. It demands a creative response. One has to rethink how life can be approached, from the simple act of walking to the complexity of spousal relationships. And because Parkinson's Disease is always on the move, we must stay on the alert for new ways to cope as old strategies lose their efficacy. As our capabilities diminish, we must incorporate new ideas of who we are into our notions of ourselves.

This is a form of creativity that can't be measured in the number of drawings executed or the number of sonnets written. It is the process of building meaning from the pile of jackstraws that we become following the diagnosis of PD.  It entails loss and bereavement. It's hard to accept. But to go on, you have to re-imagine yourself in ways you never would have without the challenge of this disease. This is the creativity demanded of all of us who have Parkinson's Disease. So far, it remains unmeasured.

Saturday, March 31, 2012

Coming Soon to Anchorage, Deep Brain Stimulation Symposium

Medtronic and Swedish Hospital are teaming up to do a blockbuster presentation on Deep Brain Stimulation a surgical procedure that can have significantly beneficial results for people with Parkinson's Disease as well as other brain maladies, including essential tremor and depression. The presentation will be called Diagnosis, Management and Surgical Therapies for Essential Tremor, Parkinson's Disease and Dystonia. Speakers will include

•Jennifer Witt, MD Medical Director, Division of Movement Disorders, Swedish Neuroscience Specialists

•Peter Nora, MD Medical Director, DBS Program, Swedish Neuroscience Specialists

•Peggy O'Neil Shortt, ARNP DBS Program Manager, Swedish Neuroscience Specialists
The event is to take place Thursday, May 17, 2012, 11:00 a.m. – 2:00 p.m. Registration opens at 10:30 a.m.
It will be held at
Anchorage Senior Center
1300 East 19th Avenue
Anchorage, Alaska 99501

*Pre-registration is required for this FREE event. Lunch is provided.

To register, please contact Keely Dailey:
425-213-2147 or
Bring your best DBS questions. These people have been at this for some time now, and should have answers.

Saturday, March 24, 2012

Dr. Alec Glass, PD Specialist to Continue Serving Alaskans in New Solo Practice

Our visiting Parkinson's specialist Dr Alec Glass has parted ways with the neurology practice he was affiliated with here in Anchorage (Alaska Neurology Center). Dr. Glass plans to continue serving Alaska patients, and as of now is setting up his own office here. If you are a patient of Dr. Glass, and wish to continue seeing him here in town, you may reach him by phone at 1- 800-764-7690 . He anticipates being available for patients by mid-late April.

Wednesday, March 21, 2012

Signing Off the Radio Show

(Above, the talented and reflective Fred Newman, sound effects wizard for "A Prairie Home Companion"  made my final edition of "Hometown Anchorage" a pleasure to do)

Today I did my final "Hometown Alaska" broadcast. The show will go on, there are three other hosts to continue the weekly schedule, and I assume they will replace me with a fourth.

This was my decision, and it was a tough one. The folks at KSKA were supportive and dedicated to high-quality journalism. I also got good feedback from  people I ran into around town. So given all that, why am I bailing?

Live radio, when done right looks easy enough. Doing it right however is not simple. You must be aware of the time, the callers on your first screen, the emailers on your second screen, meanwhile absorbing what your guest has to say and preparing your next question. Not to mention cuing and taking cues from the engineer. At the same time you want to avoid silence or "dead air". You also must  avoid live air that involves any of George Carlin's seven words that are forbidden to broadcasters. All this is a mighty load of multitasking for a person whose ability to concentrate on more than one thing, and whose ability to even speak, has been significantly eroded by Parkinson's Disease.

There were off-air considerations as well. Rounding up guests was touch and go. Trying to give the person reasonable time to call back while sweating the possibility of having to put together something on quick turn around as an alternative was a fingernail biting exercise for me.

Was it ever fun? Are you kidding? How great is it to be able to sit and chat with NPR's BJ Liederman or Alaska  novelist Andromeda Romano-Lax? It's stimulating and exciting. Which made the various mistakes and technical errors that much more painful. In the end, I was not improving fast enough to meet my own standard of what I would like to hear on the radio. The staff and the listeners deserve someone who is fired up and grateful for a tremendous opportunity. I am certainly grateful, but more toasted than fired up.

 So is this a victory for Parkinson's Disease? Has it stolen something from me again? You can be the judge of that. But I will call it a draw, or maybe a tactical retreat. A victory for PD would have been to never try, to allow the disease to foreclose options without really testing to see whether they were viable or not. Instead I got  to learn a few new things. One of which is I'm not cut out to host Hometown. I plan to advance on other fronts.

Thanks to Pat Yack, Kristin Spack, Bede Trantina and the other terrific folks at who all did their best to make a broadcaster out of me.  They came pretty close, which, given what they were working with, is commendable. The final show, with the terrific Fred Newman is now posted here. It was nice to go out on a high note. Fred? (TWEWEEEEENNNGGGG!)

Saturday, March 17, 2012

Studies and PD: If A Parkie Falls in a Forest...

Viartis, that often-gloomy-but-sensible oracle of Parkinson's Disease knowledge on the Web, recently published this takedown of Tai Chi as especially beneficial to people with Parkinson's Disease:

"A clinical trial assessed the effect of Tai Chi on postural control in Parkinson's Disease. Tai Chi is a traditional Chinese martial art and form of exercise. Participants took part in 60-minute exercise sessions twice weekly for 24 weeks. Although the researchers claimed that Tai Chi performed consistently better than other methods, the improvement was only 5% better than resistance training, and 12% better than stretching exercises. The Tai Chi group performed better than the stretching group in all secondary outcomes and outperformed the resistance-training group in stride length and functional reach. Tai Chi lowered the incidence of falls when compared with stretching exercises but not when compared with resistance training.

Out of the previous studies in the medical literature concerning Tai Chi and Parkinson's Disease, four were either non-randomised or uncontrolled clinical trials. Two failed to show any effect. Only one study showed Tai Chi to be superior to conventional exercise for Parkinson's Disease. So the evidence is insufficient to suggest that Tai Chi is effective in Parkinson's Disease."  
So, should we just go back to falling with no hope of improving our balance, but smugly aware that we're at least not wasting our time on mumbo-jumbo? Well just hold on a second partner, there may be more here than meets the eye. "Tai Chi performed better than stretching but not better than resistance training." But what if resistance training also helps us avoid falling?  I haven't been able to find anything specific saying it does  or doesn't. But There has been a flurry of articles on how terrific weight training is for people with PD. Perhaps both improve balance. In which case Tai Chi  might be "better" than resistance training, but certainly not worse. And way better than nothing.

Once again we are left wandering in a forest of studies trying to sort our way through a variety of unknowns and extraneous factors. How well-designed were the studies? How comparable were their sample groups? Scientists, like the rest of us , are human, all too human. Frustrated yet? I am. But as sure as the sun appears to rise in the East, one thing seems to be trending clearly. Exercise is emerging as a powerful coping tool for those that have Parkinson's Disease. Tai Chi, dance, Yoga, walking, weightlifting, bicycling.... surely one of these forms of exercise appeals to you enough to get your commitment.  What if the benefit is marginal? If the margin is where I can make some headway against PD, the margin is where I will do it.

Friday, March 16, 2012

Alaska MS Center to sponsor "Disability Facts and Fun Fair"

Hello Friends, The Alaska Multiple Sclerosis Center is hosting a Disability Facts and Fun Fair on Sat. April 28, 2012. The event is at Providence Hospital Cancer Center in Tower U, rooms 2281 and 2285. It will run from 12:00-4:30. I don't know much about the exhibits but we should be able to find out more when we are visited at our regular meeting by Antonia Fiflis-Fowler, the executive director of the Alaska MS Center. That's at 3:30 at the Pioneer Home.  See you there.

Friday, March 9, 2012

March Parkinson's Forecast

Hello friends,
Here is the monthly update: The telehealth Seminar will be broadcast Live  at 1:00 Monday March 12, This thrilling episode is on dance and exercise. The event occurs 
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. Right after that on March 17,  (yes, St. Pats)  We will have our regular meeting. Our guest will be Antonia Fifles-Fowler of the Alaska MS center who will talk about what services and benefits that they offer that might be of interest to those of us with PD. I know I'll be there, hope you can make it.



Tuesday, February 21, 2012

Letter to an Old Friend With A Husband Newly Diagnosed With Parkinson's Disease

Hi Anni, Very sorry to hear of your husband's diagnosis. Parkinson's is terribly complex, and in spite of years of study, still not well understood. For that reason I don't have faith in one thing as the "silver bullet" to take this problem down. Not coconut milk nor Coq10. PD needs to be addressed holistically, with medicine exercise, therapy, diet, and stress reduction. The good news is that given a few breaks and some discipline, a person with PD can have excellent quality of life for decades.

As far as the idea that one food or supplement is somehow the missing link to good health, I have seen no evidence. As noted above PD is a complex problem that involves the interplay of genetics and environment, and even personal habits. For instance, the rate of Parkinson's Disease goes down where the rate of tobacco consumption goes up. The same is true of coffee. Given the documented health risks of tobacco, I haven't taken up smoking or chewing, but I do drink coffee with pleasure. However it's good to remember that there is not a proven causal link here, merely a shown correlation, Perhaps a side effect of PD is a low tolerance for lattes and cigars, hence the association.

 But as long as we are talking about correlations between Parkinson's and what we put in our bodies, I can identify two factors to consider that seem to have consensus among those who have studied this. The first is that PD has clearly been linked to pesticide exposure. So it makes sense to me to limit further contact with these poisons. (as my cousin the internist says "When you have a bruise you don't continue to hit the same spot over and over.") Hence, try to eat organic as much as possible. Second, the great Dave Heydrick, a neurologist who has PD, looked at all the studies etc. that he could find about nutrition and Parkinson's and found that the best way to eat for PD is to follow the Mediterranean diet. Not much red meat, get protein from fish, and big-time consumption of vegetables. Even if this were not good for PD it's sensible for your underlying health.

 Beyond diet, there is much that you can do to combat the progression of symptoms. Exercise in many forms is an exploding area of progress in the struggle of the individual against this disease. Everything from dance to bicycling to yoga seems to have its scientific adherants. This suggests to me that a variety of exercise makes sense, and I can testify that it certainly makes me feel better. And again even if it had no effect directly on PD, it is the sort of practice that will bolster one's underlying health, thus enabling one to cope more effectively with the disease. Also, exercise is a proven mood elevator. The benefits of that are obvious. 10 years into my diagnosis I still ski cross country, bicycle and hike.

There are exciting developmens in physical therapy happening as well. Two I will mention, the Lee Silverman speech therapy and the related Lee Silverman Big motion therapy have both been shown to make marked improvement in the areas of speech and movement. I can testify first hand to the efficacy of the voice program which can do wonders to restore speaking ability. I have heard good things from a friend who has done the movement training.

Last, stress is known to exacerbate the symptoms of Parkinson's Disease and may speed progression. Many of the already mentioned practices will help with this, but I would also add the practice of attending a support group. In adition to providing an atmosphere where one doesn't feel compelled to minimize or hide symptoms, a support group is a place where one can pick up tricks and current knowledge. There is more hope than ever of finding ways to work around Parkinson's Disease. If you guys can stay on top of the things that matter, the best is yet to come.

Monday, February 13, 2012

Take It In a Little Here, Let It Out a Bit There: Tweaking Tweaking Tweaking

Now begins my struggle with obsessive-compulsive disorder. The manuscript for the graphic novel needs a little sprucing up. I ran into a friend today and she advised me to put a time limit on how long I would torture the thing before I sent it to a publisher or agent. So I'll give myself a week. But where to begin? I know! The beginning. After living with the opening page for awhile, I began to find it lacked drama. Just to refresh your memory, here it is
See what I mean? It seems a bit abrupt and dull at the same time. So I split it in two, like so...
...which I think works much better. More motion, more drama. Now to redo every other page in the book.

Sunday, February 12, 2012

Parkinson's Comic Manuscript Completed. Now For the Hard Part

I put on a burst of unparkinson's-like speed yesterday and finished the manuscript of "A Mixed Cursing" That was fun. Now begins the task of finding a way to get it published. There are a number of avenues as the publishing industry writhes and convulses with the changes wrought by that unbottled genie the World Wide Web. "Come into my parlor", said the spider to the fly... I will post news of the progress of the book-to-be as it develops.

In the meantime, this blog will return to its old self, albeit with (I hope) occasional excited notes about the progress of the manuscript to finished form and publication. Below are the three pages of the post-script for your feedback. Critical comments welcome! Bonus points to those who identify the references to Albert Einstein and Douglas Adams (click on images to enlarge.)

Thursday, February 2, 2012

Hello friends,
Here is some stuff that you may want to devote your attention to in Feb. First there is a concise and easy-to-read rundown on the highlights of current PD research from Booth Gardener Neurologist Monique Giroux  here

There will be another darned informative telehealth session Monday February 13. This month's topic: "Laughter, depression, cognition and what can help
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 left.

And there will be a regular group meeting at 3:30 on February 18. Topic TBA.

Thanks, and GO TEAM PARKIE!