Wednesday, December 28, 2011

He Won't Get Far on Foot...

(Click on photo to enlarge) Just as I reached my car to depart for home after finishing up a segment of a radio show, I noticed that I had left a story in my tracks. The tracks in the foreground right, heading away from my camera are the prints I made going in. The set of tracks on the left, after spending an hour and a half inside the building, are the later tracks I made as I returned to my faithful Subaru. Anything strike you as odd about them? How about this: The stride on the left is about half as long as the stride on the right. Yet both were made by the same person. Holy festination Holmes, the poor blighter was entering an "Off" state as he walked back to his car! His medications were sputtering out and his ability to move freely through space is literally vanishing before our eyes! The early steps show him enjoying an "on" state, with his medications putting the cut in his strut and the glide in his exuberant stride. But the return steps tell of a world of neurological woe. As John Callahan said "He won't get far on foot".

Sunday, December 18, 2011

Comicization of a (Relatively) Recent Post

I now have about 50 of these pages done. Sort of getting the idea. I plan to start on a major new part of the story, the brain surgery I underwent about year and a half ago. Still trying to figure out the angle I will take. I'm thinking something along the lines of "Super-intelligent beings come back from the future to patch me up".

Wednesday, December 7, 2011

The December Parkinson's Report

Hello Friends, This is your rundown on PD events that I know of for December in Anchorage. MONDAY the 12th will be the Telehealth presentation. The talk will be by PD psychologist Dr. Darelle Volweiler, who will offer advice on getting the best of holiday stress. Look for this event in room 2401 at 1:00 p.m. in the Providence oncology wing. 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, not far from the statue of Mary in the nook at the end of the Hall. Our Support group will meet the 17th at 3:30 for our annual holiday potluck. Bring something delicious to share. In the meantime, enjoy this festive time of year, and do your best to not fall down.

Saturday, December 3, 2011

Thar She Blows: Another Peek At My Graphic Novel Manuscript

Here is a page that owes a debt to the stark illustrations that Rockwell Kent created for an elegant edition of Moby Dick. An artist with wanderlust, Kent actually spent some time in South Central Alaska. He lived for a period on Fox Island in what is now Kenai Fijords National Park. It's hard to imagine someone with a greater ability to strike the proper tone for Melville's novel than the rugged Kent, who would have felt right at home with the rigors of a whaling voyage. As it turns out, there is inspiration for those of us that have PD in Melville's book as well.

Thursday, December 1, 2011

Another Panel From a Book Struggling To Be Born: The Tortoise

This sums up how I often feel about having Parkinson's Disease. The spirit is willing, but the flesh is aboard an ancient incarnation of slow.

Monday, November 14, 2011

Comic Sonogram, Another Exclusive Look at a Book Stuggling to be Born

Here is yet another snippet from the proposed Great Parkinson's Graphic Novel currently in pre-beta mode at PDS Labs. These are two panels abstracted from a passage on Parkinson's vocabulary. These illustrate the form of depression which I suffered, known as "Emotional Incontinence". Depression is way more common in Parkinson's Patients than in the population in general, but the incidence in both populations is expected to spike dramatically higher if this project ever sees print.

Tuesday, November 8, 2011

Yikes! A scary New Page

Parkinson's, to paraphrase a well-known quip, is not for sissies. It's not for dummies either. Here is the most recent page in my attempt to adapt this blog into a brawling, sprawling blockbuster graphic novelesque look at Parkinson's Disease. We are up to page 36, I'm guessing the final length will be about 100. Your feedback welcome!

Saturday, October 22, 2011

Latest page

Here is yet another new page for the graphic memoir of my Parkinson's experience. I am completing about one page per day. Each page is a series of choices, from what blog posts will work in the comics format to what angle to view the scene from. Other decisions involve how to break up the text into visual moments that lead naturally from one to the next. Then there is the matter of formatting and editing, both for the way the story flows and the nuts and bolts matters such as spelling. Should you notice something amiss, dear reader, do not hesitate to alert me via a comment.

Saturday, October 15, 2011

Parkinson's Disease and Eyesight, Notes from a Recent Telehealth Presentation

This is a tidied-up version of my notes from a Telehealth Session presented by Dr. Heavin Maier an Optometrist in Spokane. This was one of the more valuable of the telehealth sessions I have attended. There was a great deal of info that was news to me. I have tried to relay as much as I could here, but there are gaps when my attention wandered momentarily. I recommend that you visit their website to obtain a copy of the lecture on DVD or view it if and when they post it with their other on-line videos. Thanks to Dr. Maier for a comprehensive, well-organized and informative session. General vision principles We need to maximize vision as long as possible Vision is one of two main senses that orient us in space, the other is proprioception. As balance and other orienting mechanisms fail, vision can help compensate. Vision can help override cuing problems. For example tile grids or tape lines on floors that can help people unfreeze and walk normally when they see them.
Parts of the eye Sclera: Tear film is compromised by age, some meds, and reduced blink rate. Normal blink rate 12x per minute. Some people with PD blink as few as 1x per min. This will lead to dry eye. Cornea: dry eye will cause chronic breakdown of the cornea. Sensitivity goes down infection goes up. Iris: The colored part of the visible eye, expands and contracts to regulate the amount of light that enters the eye. Lens: focuses light on the retina. Vitreous humor: Clear filling of eyeball, that's where the floaters are. Retina: An extension of the brain there are dopamine cells here affected by PD. Optic nerve: over a million fibers that carry signals to the brain, which converts them to images. Comorbidities As we age we develop comorbidities, other diseases that affect vision on top of Parkinson's. Some of these comorbidities and teatments for them follow. Dry eye: Artificial tears can treat dry eye. Autodrop can help administer eyedrops. Cataracts: Cataracts caused by exposure to uv light. Cataract surgery very successful. Macular degeneration. Significant degradation but not total blindness. Glaucoma: elevated pressure in eye damages nerves. Diabetic retiopathy. After age 43, Focus problems. Get different glasses for different distances. Select different frames for different distances so you can easily tell them apart. Avoid trifocals and lined bifocals they can cause falls, confusion. Because of falls, shatterproof lenses are good. Pd-specific impairments Low contrast sensitivity: difficulty in distinguishing contrast. Sinemit helps. Filters help (like goggles for skiing) yellow, amber and pink.. Try them out. Double vision binocular and monocular. If you cover an eye and you still have double vision it's monocular. When the eyes work in tandem, the coordination can be thrown off by PD. Reduced visiospacial attention. Eye muscle movement difficulty. Quick eye movements are impaired and this reduces recognition, Abnormal color vision red- green distinction degenerates. Visual hallucinations. Opening the eyes while sleeping. Eye fatigue, can be caused by wrong prescriptions. Different eyedrops for different types or causes of dry eye. Many Pd-related eye problems can be helped by your eye doctor. talk problems over with them.

Thursday, October 13, 2011

October Meeting (and a look ahead to November)

Once again it's meeting time. My plan is to deliver a cliff-notes version of the excellent recent telehealth presentation on PD and eyesight. There was a great deal of interesting information that was unfamiliar to me which I want to pass on. Then mark your calendars for the November meeting when we will have Yoga instructor Beverly Churchill in to help us with balance, strength and flexibility. I look forward to seeing you all at 3:30 in our spacious and gracious digs high atop the Pioneer Home!

Tuesday, October 11, 2011

"I pulled on a thread...

... and where has it led? Where has it led?" So while I was mucking around with the new font I made a discovery concerning the page architecture, the underlying structure I had set up that is the skeleton that the images hang from. There was something bothering me with the lack of flow that was occurring, a knocking under the hood, a certain cog-wheeling in the joints between the panels. As an experiment I broke a couple edges off the boxes containing the narration. The effect was much less claustrophobic. The page went from this:
To this
(Click pages to enlarge) Much better! The muses are pleased. But they have one little request, just a small thing... now go back and retrofit all the pages that you thought were finished with the new look. Muses. Can't live with 'em, can't live without 'em.

Wednesday, October 5, 2011

Book report: One page at a time

It's always good to take a break from a big project. Breaks refresh your spirit and your eye. Recharged you return to the work at hand and you see you've made a Big Mistake. Good thing you're so refreshed because now you won't be happy until you uproot the Big Mistake (BM) and dispose of it.

In this case, I decided that the narration text should be a different font. The elegant Roman face I had chosen seemed too tight, too dense. Below is the old font.

And here is the new font

Unfortunately I already have 16 or so pages that all had to have the type reset. That meant redrawing many of the type boxes to fit the new type in. Just to make more work, I decided that since I had hand lettered the dialog in some frames, I should hand letter ALL the dialog to be consistent.

So I did. It could have been worse. I could have changed my mind about the text font on page 50 instead of 16. Good thing I left when I did. Of course I could still change my mind at page 50 and redo all 50 pages. Stay tuned.

Below is one of the pages you haven't seen yet. You can click the image to enlarge.

Monday, September 19, 2011

Graphic project update: A Triple Tribute to Robert Johnson, Skip James and Pam

Click to enlarge image

This is from page 16 of the book project. This panel is a triple tribute, to Robert Johnson, Skip James, and my wife Pam. Pam and I used to drive to work together to our jobs at the Anchorage Daily News. I would customarily time my meds so that I would arrive as mobile as possible. This spared me the embarrassment of shuffling across the parking lot beneath the Newsroom window wall. Not to mention making me more stable on the icy incline of the sloped parking area.

Unfortunately there were certain obnoxious side effects. There gets to be a point Parkinson's medications make up for what they lack in subtlety with power. This often put me into a mildly manic state that meant my long-suffering bride was often subjected to lectures on topics she of course cared deeply about- for instance the relative merits of bluesmen of the 1930's.

Often these lectures would be repeated from ride to ride, sometimes in fragments on the same trip in. Other favorite topics were state, local, national and international news, movies, and naturally, traffic reports. We referred to it as "Radio Pete" No commercial interruptions no volume control, all the obscure references you can stand. And no, we're not taking your calls or requests. Fortunately it was a short commute.

Sunday, September 11, 2011

A Mercifully Short History of Bad Ideas

Don't be mislead by the title of this post. I have bad ideas to spare. In fact if you need any, call or email and I'll send you some of my overstock. This will be a mercifully short history because of the concentrated time period in which it takes place, not because of a sudden short supply of stupidity.

Our sorry tale begins on Labor Day. We had plans to go to the Alaska State Fair. My back was acting up for the first time in years and I decided it would be smart to stay home. This was a good idea. Probably the last one I had that day. Pam asked if she should stay home to keep an eye on me, but I didn't want her to miss those mammoth cabbages, weird looking chickens, and enormous hogs raised by improbably young members of the 4H club, so I said "Don't worry about me, I'll be fine." Stupid idea #1.

She wisely gave me a second chance to have her stick around which I declined citing the profoundly stupid point that I would likely be too proud to accept her help on anything consequential, so she might as well go enjoy herself and not worry about me. If you're keeping track this probably counts as bad idea #2.

Two or three hours into her absence my back began to act up with a sadistic streak unlike any thing I had ever experienced. After a long and inventive period of writhing around I discovered I could attain a measure of relief by lying on the floor and curling my legs up to my chest. Expecting Pam to return at any time I decided to kill the intervening hours by watching "Magnolia". Which I did on my back my legs curled up, the picture on the TV appearing upside down. You're probably thinking this was bad idea #3 but it was actually worth it. I love William H. Macy in this flick.

Eventually Pam returned and found me on the floor doubled up watching Macy get creamed by a rain of frogs. I lay down in the back of the Subaru and we drove at a smart clip to the emergency room. They loaded me up with 20 mg of Valium and when that didn't kill the spasms in my back muscles they threw in some morphine too. That worked. I even felt good enough to lecture Pam about how morphine was known as "Soldiers Joy" back in the Civil War, hence the name of the popular fiddle tune by the name of "Soldiers Joy". Music and drugs go way back together. Naturally Pam found this fascinating.

Armed with a prescription from the ER doctor for Valium to relax my back we drove to the all-night drug store, and picked up some little green pills. Boy did that do the trick! I became the very incarnation of mellow. I wasn't worried about anything. For instance walking around the house in the dark with a compromised sense of balance from PD further compromised by muscles relaxed by Valium. This led to a certain amount of banging and crashing as I rammed into walls and furniture. Bad idea #4? I think so.

At this point Pam began to get a touch irritated "What are you trying to prove?" She demanded. A reasonable question. I'm not sure of the answer. Maybe that she doesn't have to drive all the way to the State Fair for entertainment.

Sunday, September 4, 2011

Sneak Peek: Progress on the PD comic "A Mixed Cursing"

Drawings ©2011, Peter Dunlap-Shohl, Click to enlarge

For years people have been prodding me with the question "Why not turn the blog into a book?" I usually counter-prod with the question "Do we really need another book on Parkinson's Disease?" Then several months ago I ran into two friends, Scott and Julia. Scott is a great fan of graphic novels, which is a highfalutin' term for fancy comic books. We were chatting about "LOGICOMIX" which is,among other things, a comics biography of Bertrand Russell we both read and enjoyed. "You have enough in your blog to turn it into a graphic novel", Julia suggested. I told her I didn't think so. The blog doesn't really amount to a narrative, the drawings aren't connected enough. The whole thing seems like a fragmented, episodic series of observations. Not enough graphic or novel. Or maybe I'm just lazy.

Later I was talking to my friend Steve. Again the dreaded book subject came up. I raised the usual objections. But he may have given me a way to focus that will work. "You treat Parkinson's Disease like an adventure", He said. Hmmmmm. With a massive, Herculean effort, a guy might be able to make that work. I've got about eleven pages so far. They appear above. above, in case anyone is curious.

One reason I have been reluctant to start a project like this is a fear it will interfere with blogging. Then it occurred to me I could post pages here from time to time, neatly killing two flies with one swatter. Page twelve calls, must run...

Thursday, September 1, 2011

Classes for Alaskans Dealing With a Chronic Disease

Hello friends,

Below is a brief description and contact info regarding a series of classes being put on by the Multiple Sclerosis Center for those of us dealing with Chronic disease.

Better Choices Better Health Living Well in Alaska

This is a Self–Management program for those dealing with
Chronic Diseases. It is a six week course designed to bring
you hope, tools and resources. It will allow you to improve
your health-one step at a time. It begins October 12 and
will meet every Wednesday through November 16th. It runs from 6:00-8:30pm, and will take place at the Alaska MS center, at Providence Hospital. Pre-registration is required and limited space is available. Please RSVP by calling 929-2567 or email us at .


The Alaska Multiple Sclerosis Center (AMSC)
3340 Providence Drive Suite 552 (Tower A)
Anchorage Alaska 99508

Sunday, August 28, 2011

Neurologist Dr. Monique Giroux To address Anchorage Parkinson's Community

On Thursday September 22, 2011 Dr. Monique Giroux will speak on the Prescription for Brain Health with Parkinson's at 2:30 pm, Providence Alaska Medical Center. Dr. Giroux will examine the question of how exercise and other lifestyle choices affect your physical
symptoms and brain health with Parkinson’s?

This should be a dynamite presentation. It's being put on by The Northwest Parkinson's Foundation.

The event will be held in the Providence West auditorium, which I am told is located near the cafeteria in building "H" They ask that you register beforehand. Here is how:

Call: 1-877-980-7500

I hope to see you there. Thanks to Alecha Newbern at NWPF for getting the word out.

Monday, August 22, 2011

Breaking News! "Dignified Dachshund from Anchorage Hillside" Sweeps to Third Place in Parkinson's Pets Competition.

The voting is over, the people have spoken. The dignified dachshund from the Anchorage Hillside came in third. She wins some Gramma Lucy's dog food and assorted Michael J Fox swag which we expect will make great chew toys. Vienna wishes to thank you all for your unstinting support. It's always a tough road when your legs are only six inches long.

Vienna expects to take a few weeks off to rest, spend some time with family, and pursue her hobby of scratching herself. Although she is disappointed to have slipped in and out of first place to finally finish third, she has not ruled out future electoral possibilities.

"We ran a hard campaign, a clean campaign that we are proud of. We stuck to the issue of my cuteness, and that message obviously resonated with a great many of the voting public." She went on to point out that her campaign attracted national as well as international support and said she would like to send a shout out to her friend Noelle in Great Britain and a big thank you to Roberta Greenberg and the Los Angeles Dachshund play group.

She was quick to congratulate her opponents. She had nothing but praise for first place winner Our Perfect Champion who "not only ran a clean campaign but also well-brushed" And she hopes that Milly will be able to chew her share of the prize dog food without too much difficulty from that nasty under bite.

Meanwhile behind he scenes rumors of a campaign in disarray swirled throughout the day. There were unconfirmed reports that Vienna had fired her one-person campaign staff, complaining of his lackadaisical approach to the campaign. Sources close to Vienna, including her closest friends Shadow and Olive refused to comment, although some reporters quoted Shadow as denying the entire story with a loud "NAYYYYYY!"

More on this story as it develops, if it develops.

Vienna is interviewed on KTUU Television here here

Friday, August 19, 2011

Michael J Fox Fundation Pets for Parkinson's Contest- Dignified Dacshund Struggles for Recognition

(Photo by Pamela Dunlap-Shohl)

I don't remember where I saw the information about the Michael J. Fox Foundation's Pets for Parkinson's contest. I do remember thinking that the above portrait of our Dachshund, Vienna, had a certain "je ne sais quois". For fun, I entered it.

Imagine my surprise when I went to the page where the frontrunners were posted and found Vienna running a respectable second. I voted, posted the info to my facebook page and was rewarded when I checked in later to find Vienna had made the leap to frontrunner! Since then she has slipped in and out of first place. Currently she is right behind some silky blue-blooded golden retriever named... are you ready for this? "Our Perfect Champ" Well. It ain't over until the fat Yorkie sings.

How can you help? Glad you asked. Just go here, and cast your vote for the scrappy underdog, Vienna. Look at that face. How can you say no?

Sunday, August 14, 2011

Team cul de Sac Update: Cartoonists Versus Parkinson's Disease

Chris Sparks, our lovely guide and mastermind of the Team Cul de Sac project, gives us a quick tour of some of the wonderful art work contributed by a talented crop of cartoonists to raise money for the Michael J. Fox Foundation. Chris started this project to honor his friend, cartoonist Richard Thompson, who suffers from Parkinson's Disease. Thompson is one of the most admired pens in the business, but only because he is wildly talented, creative, and a gentleman to boot.

The cartoonists were invited to create work featuring the characters invented by Thompson for his Cul de Sac strip. The artwork will be combined into a book, sales of which will help support the Fox Foundation. Individual pieces will be auctioned and money will be raised for Fox that way as well. If you've ever dreamed of owning an original by Bill Watterson, Lynn Johnston or any other fine cartoonist, watch the Team Cul de Sac blog for details.

In the meantime a big fat thanks to the people at Andrews and McMeel, who are publishing the book, and especially to Chris, who has a tiger by the tail. Wait a minute.... Is that Hobbes?

Thursday, August 11, 2011

A 900 Mile Message

Pam and I met Doug Bahniuk at the end of his 900 mile journey across Alaska (Photo by Pamela Dunlap-Shohl)

When asked why he he wished to climb Mt. Everest, mountaineer George Mallory is said to have replied "Because it's there". When you ask Doug Bahniuk why he rode his bicycle 900 miles from the North Slope of Alaska to Anchorage, he cites a more compelling incentive. Doug wanted to show other people who suffer from Parkinson's Disease that adventure and accomplishment are still within their grasp.

To achieve this, he set about a test that he describes as "Brutal". Riding solo across Alaska on a road of potholes and "washboard" ripples, a road littered with rocks the size of peaches, he fought headwind and fatigue for nearly three weeks. Doug rode through mud and mosquitoes up mountain passes. He sheltered from the rain under a bit of plastic. He pitched his tent over beds of rocks that prodded him at night through his blue foam pad. He fell off his bike three times.

He finally arrived in Anchorage hungry, bug-bit, triumphant and relieved. He can now return to his normal everyday life. A life where he must deal each day with Parkinson's Disease. A task that will surly seem tame compared to his wild ride from the remote Arctic back to civilization.

Mallory disappeared on Everest. Mortal risk was one of the hazards of going there. With Doug, it's not the going there that matters, it's the coming back.

Sunday, August 7, 2011

Friday, August 5, 2011

August Alaska Parkinson's Calendar

August is here. If, like me, you still have Parkinson's Disease, you may be interested in the following...

Monday, August 8, 2011 A Parkinson's Telehealth Seminar on Bone Health and PD with Dr. Lynn Kohlmeir. Look for this event in room 2401 at 1:00 p.m. in the Providence oncology wing. 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. The room will be on your left, not far from the statue of Mary in the nook at the end of the hall.

We will have our regular meeting on the 20th, fifth floor of the Pioneer home, 3:30, subject to be announced.

I also would like to bring your attention to The Alaska Parkinson's Page on facebook. This is an effort to create a place where people who are not able to take advantage of our support group can have a virtual support group on the internet. If you know of people who live out of town, or simply can't get to meetings for whatever reason, please point them to This page

I would be happy to have suggestions on what to include there, so check it out and chime in.

Get outside while it's not raining!

Sunday, July 31, 2011

Time to Take Your Diet Bat-Free

Finally some good news for those searching for ways to avoid Parkinson's Disease that are simple, within our control and do not involve forced exercise. It's time to take your diet bat-free. Viartis Parkinson's News reports that the incidence of Parkinson's Disease in the Chamarro people of the Marianas Islands correlates with the consumption of fruit bats. The islanders enjoy the bats as a delicacy on special occasions the way North Americans might eat turkey. (I know what you're thinking, but have you ever looked at a turkey? They are at least as ugly as a fruit bat.)

According to Viartis "It is thought that the Chamorro people develop the symptoms by eating a species of Flying Fox called the Mariana Fruit Bat. The Mariana Fruit Bats consume large quantities of neurotoxic cycad seeds. As the number of Mariana Fruit Bats has declined so has the illness. Eating these bats is a centuries old tradition amongst the Chamorro people."

Having warned us not to eat the leathery-winged little fly-by-nights, the article helpfully goes on to give tips on how they are prepared. "Served at weddings, fiestas, and birthdays, the etiquette of bat-eating and preparation involves rinsing off the outside of the animal like you would a cucumber and then tossing it into boiling water. The bats are then served whole in coconut milk and are consumed in their entirety."

One can only imagine how bad the situation would be if these creatures were a staple of the American diet. With our propensity for super-sizing and mass merchandising it would only be a matter of time before you could pick up a Bucket-o-Bats from KFB (the Colonel's secret recipe) or maybe some extra-spicy Buffalo Bat Wings to chow down on while watching the big game. Parkinson's Disease would be an epic epidemic and the bats would be even more endangered than they are now.

The bat-free diet. Avoid PD and be green at the same time. What's not to like?

Friday, July 29, 2011

Tracking Doug: In Spite of Parkinson's Disease, Cyclist Bahniuk near to 900 Mile Goal (Map updated 8-6)

Sources: Wikitravel, Doug's Wild Ride Blog. Click to enlarge

For those of you following the adventures of cyclist-with-Parkinson's Disease Doug Bahniuk at a safe distance, Here is a rough location based on a phone conversation. Doug is in Wasilla. We expect him Sunday. You can follow Doug on twitter and on his blog. Go Doug!

Wednesday, July 27, 2011

Announcing a New Virtual Gathering Place For Isolated Alaskans With Parkinson' s Disease

It bugs me that there are undoubtedly Alaskans out there with Parkinson's Disease who have no support group nor the ability to travel or live where there is one. As far as I know, the only group is in Anchorage. (Is there some group out there I do not know about? I would love to be corrected about this!)

As an experimental attempt to get at this problem I have created a new facebook page. So you're off in a remote corner of Alaska and dealing with Parkinson's Disease? This is the page for you. Post your questions and we'll try to get answers. Let us know where you are so that you can connect with others in your area. 

Come on in, the stove is warm, and so is the welcome.

Thursday, July 7, 2011

Alaska Parkinson's events for July

Hello one and all,

here is what's on for July:

Monday July 11 at  1:00 p.m. Parkinson's Telehealth presentation
in room 2401 in the Providence oncology wing. This will be a talk with neurologist Susuie Ro  about PD, sleep and fatigue, and what to do about it.

Saturday July 16 Our regular meeting will be a talk based on notes I obtained at a recent PD conference outside.

I hope your Summer is going well.



Monday, July 4, 2011

Scariest Word in the English Language: Yes

"No" is the place of safety. Barricaded from the world by this tiny word one can find respite from shouldering the burden of Parkinson's Disease and stooping under its weight in front of others. "No" will spare you scorn and pity. It will spare you the effort of getting strangers to understand you. It will spare you the anxiety of being caught by a freezing episode in public. It will spare you another performance of "The Bladder Dance" as you attempt to stifle the distress signals that a load of two tablespoons now causes that implacable thug of an internal organ.

The advantages are clear. "No" keeps you out of trouble. With so much to recommend it (it's even short and easy to pronounce) one is tempted to rely on it exclusively. No problem. No worries.  Alas,  in the never-ending balancing act that is living with Parkinson's Disease it's easy to overdo "No". No fair!

Unfortunately once you decide you need an alternative, you quickly end up at "yes", with all the stress and storm that comes with it. "Yes" is commitment, initiative, creativity, yes is work.

With Parkinson's disease, just getting up in the morning is work. Why should we pile more work on top of  the difficulties we experience with tasks of everyday living? Well, because life goes on after we have finally managed to get our shirts buttoned. To rely on "no" is to become one of the living dead, to play right into the hands of Parkinson's Disease. And, as you may have noticed, Parkinson's does not have our best interests at heart. Saying yes is one more way of denying PD a chance to reach into your life with its cold, dead fingers.

Why is all this on my mind? Recently I was invited to become one of the hosts on the local public radio program "Hometown". As one of four rotating hosts the job is to come up with monthly show topics and guests,  to interview guests live on the radio, take calls and read email questions, along with other tasks too tedious and trivial to mention.

I did a quick inventory of my radio skills and assets. Negligible radio experience? Check. Difficulty speaking clearly? Check. Impaired  multitasking skills? Likely.  All the leading indicators pointed emphatically towards "no".

I said yes.

Theoretically, I can finesse the above  problems, or they wouldn't have asked me, right? What is the worst that could happen? I mean, besides having to do the bladder dance in the studio very quietly while quizzing a guest on the finer points of the municipal code?  I guess the worst can be summed up in the word "Failure".  And I'd rather be a radio failure than a successful nay-saying member of the living dead.

Hometown Alaska airs on the 13th of July at two on KSKA, fm 91.1 We'll be talking about Alaskans and social media. Your calls welcome, the less I talk, the better.

Sunday, July 3, 2011

"I Am Crushed" Weeks Before 900 Mile Ride to Raise Parkinson's Awareness, Rider Doug Bahniuk's Bike Stolen

Doug Bahniuk relished the idea of riding his bicycle through 900 miles of remote Alaska. This would be a rugged trip for any healthy bike nut but Doug is a bike nut diagnosed with Parkinsons Disease. He planned to use the trip to raise awareness of what those who suffer from PD are capable of. Then some thief stole the bike he had been training on and customizing for the 900 miles of bad road between Alaska's North Slope and the city of Anchorage.

Doug brings a certain brio, even bravado to his adventures. In a recent interview with Off and On, he scoffed at the tribulations that his proposed ride could have in store " I've learned to shrug it off, not feel sorry for myself, and concentrate on what I have to do. And I remember to feel joy. When all those things happen, I remind myself to feel pride, to enjoy the beauty, to enjoy the rain. I tell myself that I'm a tough SOB and I challenge the Gods to bring it on."

That's vintage Bahniuk, which makes this from his recent post on the theft of his bicycle seem especially poignant "It was gone. Stolen. I am crushed."

What can you do to help? Well, you could do what I did. Go to the donation page of the Davis Phinney Foundation, designated beneficiary of the ride, and drop a dime on Doug. Then fire them off a note explaining what inspired your donation. It doesn't have to be much, my guess is that any show of support now will pay big dividends to Doug's morale. We can't give Doug his bike back, but we can restore some of the faith in humanity the thief stole along with it.

Sunday, June 26, 2011

The Re-Animation of James Tim Walker

Parkinson's disease wants to take everything you ever worked at. Everything. It wants skills you mastered so long ago, you can't remember the heart and soul you put into acquiring them. It wants skills so basic that you assume that they will always be a part of you. To walk, to speak, to feed yourself, to stand without toppling are just givens of being human that most of us have down cold by the time we are ready for kindergarten. Parkinson's wants all that.

But before it takes the essentials of what we normally think we all share, Parkinson's Disease wants to hollow out all the things that make you the particular human that you are, that you have shaped yourself into. It wants to take the career you have chosen. It wants the ways you play and the time you volunteer to the causes you honor. This jealous disease demands you see less of your friends, and does its utmost to push family away. It goes to bed with you each night and gets up with you each morning, jealous, and zealous.

How do you tell this disease "no" when it has crept silently into every cell of your body and settled into every sinew? To defy such a thorough occupier you must catch it off guard. To surprise Parkinson's you must surprise yourself. You must re-imagine yourself to hold paradoxically what you can. Which brings us to Tim Walker.

Tim fell in love with cartooning early and passionately. He was good enough and disciplined enough to work at a number of well-known animation studios, from Bakshi to Disney. Over the years Tim worked with classic characters of American animation, including Scrooge McDuck, Tom and Jerry, Sylvester and Tweety, and The Flintstones. He was fortunate enough to live his childhood dream, and to find that dream fulfilling.

When Parkinson's came to call on Tim, it predominated on his right side. His drawing side. The hand most directly connected to his heart, the hand with which he built his career and his identity, seemed to rebel. It refused the simplest request, disobeyed the most urgent commands. Cornered by his disease, there was no way out but through the wall.

So Tim retaught himself to draw and write left-handed. You can verify for yourself how tough this is by trying it. I did and you can see the result above. Imagine the initial frustration he must have felt as neither hand would perform as he knew it should. No imagination is needed to see the joy he felt when he regained mastery, it is evident in the book of drawings he has completed since. (Tim generously sent me a copy.) The drawings are spontaneous and fluid, the last thing they say to their viewers is Parkinson's Disease. But follow them back far enough and you'll find a wall, a wall with a Tim-shaped hole in it.

Sunday, June 12, 2011

Questionable Taste: Culinary Adventures With the Parkie Chef

I've never been an adventurous eater. Aside from the usual dirt as a child, unintentional swallowing of bugs while bicycling, and rare instances of exoticism (chocolate covered ants anyone?) I've only eaten off the beaten path when forced to by circumstances beyond my control.

When obliged to improvise or experiment I've come up with some memorable meals. The kind of memories people drink to forget. Desperately short of food once while backpacking through Europe I found an ancient packet of plain, unsalted oatmeal at the bottom of my pack. Cooked up, it was bland in a hideous way that rendered it nearly inedible. Solution: Chef Pierre boldly mixed in an equally ancient packet of freeze-dried French onion soup. When added to the oatmeal it produced a savory, zesty creation even less edible than the plain oatmeal.

Since then I've developed a small but dependable repertoire of successful recipes that are nourishing and tasty. At least I believe they are tasty. Parkinson's can destroy our ability to smell. Taste depends greatly on smell. Without much ability to smell, the sense of taste is significantly dulled.

As far as the things that I've lost to PD go, this one is among the least troubling. It's much tougher to cope with the impact on my ability to draw and to play music and to do a host of other things I'll not bore you with here.

But there is one important symbolic aspect of food I still try to cling to. Cooking for someone is a demonstration of affection that bypasses words. To prepare food in a way that promotes health, gives pleasure, and requires us to take time to do it right sends a primordial message about how much we value those that we cook for.

I still try to practice this unspoken language of caring. But some of the messages I send can be mixed at best. What is your beloved mate to think when she comes home to your specialty "Stew a la Buffalo Top Sirloin That has Defrosted for a Week Too Long?" The fact that you eat it too only confirms that you are an idiot.

Another problem is overcompensating for inability to detect subtle flavors by going wild with the spices. Is there such a thing as too much cayenne and cinnamon in the curry? Theoretically yes, but I've yet to hit my limit. Why do you think Costco sells those enormous containers of spices? Not so you can be stingy with them, Wolfgang! And maybe this points the way to a possible solution. If I nuke enough of her tastebuds, we'll both be able to enjoy my cooking again.

Saturday, June 4, 2011

Doug's Wild ride, Update

As you may recall, during our last exciting episode in the Summer of 2010 one Doug Bahniuk fought Parkinson's, Alaska drivers, and killer winds to ride his bicycle solo between Anchorage and Fairbanks. This Summer he plans to return with a ride that makes his last one look like an afternoon trip down the Coastal Trail. You can hear from Doug himself about his plan to ride the wilderness road from Alaska's North Slope to Anchorage by tuning in via your computer to The Outspoken Cyclist where the interview will be streamed at 1:30 Anchorage time (5:30 Eastern Standard Time). The show will also be available to download as a podcast.To find out more about Doug, you can look as this website here or read his "Off and On" interview here.

Wednesday, June 1, 2011

The Southcentral Alaska Parkinson's Seer Looks Ahead Into the Month of June

Hey folks, the crystal ball is warming up, the test pattern looks good, and the future is taking shape in front of my eyes! I see... yes!... Another telehealth conference to be held at Providence Hospital. The topic "Tips to improve apathy in Parkinson's". This session will be led by Dr. Monique Giroux, of the Booth Gardner Center in Seattle. Look for this event in room 2401 at 1:00 p.m. in the Providence oncology wing on Monday, June 13th. But that's not all! Our Summer picnic will be held June 18, 3:30 p.m. at the home of the Dunlap-Shohls. This is a potluck, We'll have buffalo burgers, buns, condiments and such, you guys bring the salads, desserts, and other side dishes or beverages. To find our place, head East on Abbott Road from the intersection of Abbott and Lake Otis (uphill toward the majestic Chugach Mountains). You will come to a stoplight that adorns the intersection of Abbott and Elmore Road. Go right (South) on Elmore and look for our house 9601 Elmore, on the left, about a quarter mile down the road, halfway up a small hill.

Also for those of you interested in earning extra credit, There will be a "Webinar" information session that The Davis Phinney foundation plans to hold on the 15th of June. The subject of the Webinar will be the LIVING WELL CHALLENGE, which the foundation calls "A Victory Summit and Panel Discussion Webinar on how to live well with Parkinson’s".

Below is the Foundation's description of what they will offer:

• Presentations and discussions with leading researchers and movement disorder specialists from around the country
• Topics like the latest in research and clinical trials, nutrition, exercise, how to communicate with your doctor and your family.
• And finally, giving you access to worksheets and tools to support you in your
commitment to live well today
Challenge yourself to live well today. Watch with a friend or loved one. Get the tools and information you need to live well today with Parkinson’s disease.
Register today by visiting their website and clicking on The Victory Summit page. Or call 1-877-274-7673."

The time is set for 1:00 pm Eastern Standard time which makes it 9:00 a.m. Alaska time by my not-too-reliable reckoning :) The Davis Phinney foundation is a PD group started up by Olympic cycling champ and PWP Davis Phinney.

While techno-wiz is not one of the things that springs to mind when you think "Pete" I am pretty sure that I can stream this to my large screen TV if anyone would like to come by and watch it at my house. Warning: If you do come over, you may be licked by an extremely cute Dachshund. If you would like to come, please send me an email (dunlapshohl(at)gmail(dot)com) by June 1 so I may make all in readiness.

Your humble servant,


Wednesday, May 25, 2011

I'm Afraid It's Parkinson's Disease. Psyche!

Once again the enigmatic oracle Viartis has emerged from the mists of the Web with disturbing Parkinson's news, this time about misdiagnosis. Citing a finding that "Initial diagnoses of Parkinson's Disease made by general neurologists were only infrequently changed, yet were incorrect in 24% to 35% of cases". The Viartis item goes on to report that "This means that many people have been treated for Parkinson's Disease for the rest of their lives without ever having had Parkinson's Disease. In people taking Parkinson's Disease drugs, Parkinsonism was confirmed in only 74% of cases and only 53% of them had probable Parkinson's Disease". You can find the article with links to supporting material here.

What else could your disorder be? Benign essential tremor, Wilson's Disease, perhaps a brain tumor. These conditions call for radically different approaches than PD. If a general practice neurologist comes up with the wrong diagnosis up to 35% of the time how do you think people outside the neurology field are doing with their diagnosis accuracy? What's a potential Parkie to do?

This is why it is useful to either get your diagnosis or a second opinion from a movement disorders specialist. Your chances of a correct diagnosis are best with a specialist with extensive training and practical experience in the area, hence the value of the neurological sub-specialty of movement disorders. Unfortunately, even with this training it can be tough to sort the differences in types of Parkinsonism.

So we find yet another question underneath the surface here, which could be phrased this way: "Aughhhhhhh! You always tell me that I need to trust my doctor, then you tell me that I can't trust my doctor? What's the point? I hate you! I hate you!" The point is that you have to be involved in your care. You must seek out the most high-quality information you can find from a variety of trustworthy sources, then listen to your own body to confirm that whatever they tell you squares with what you are experiencing as a patient. In a perfect world we wouldn't have to ask these questions. In our imperfect one we must answer them the best we can.

Friday, May 20, 2011

Washington Post Interviews Obscure Cartoonist from Far, Far Away, and Famous Cartoonist Nearby About Parkinson's Disease

The Public Relations department here at Off and on and Frozen Grin Industries would be remiss if they did not call your attention to this and, more important, this poignant interview with master cartoonist Richard Thompson, whose Parkinson's Disease emerged as he was right at the top of his game. Thanks to Michael Cavna for his perceptive and wide-ranging look at how Parkinson's affects those it afflicts, and how they deal with it.

Sunday, May 15, 2011

Have I nagged you to exercise lately?

I have a game I like to play whenever I meet a neurologist. I always ask "What is the one thing you wish you could get patients with PD to do?" So far, they always answer "Exercise".

Sorry. I know you were hoping the answer was "Spend more time sorting socks" or "Work on completing your string collection" or even "Write essays about the sleep habits of the spiny anteater". Anything but exercise. Unfortunately none of these things have been shown to help those of us with Parkinson's Disease when studied under rigorous lab conditions.

Exercise is a different story. You don't believe me? Well check here, here, here, here, here, or here. You're convinced now, right? Good, don't forget to consult a doctor before you start.

But do start. Imagine the power in your grasp here. You can improve your ability to move. You can improve your clarity of thought. It's even strongly possible that you can modify the once inexorable path of PD progression. And most important, if enough of us will take up exercise and faithfully stick to it, doctors will have to come up with a different answer to my question.

Saturday, May 14, 2011

Doug's Wilder Ride

On his second Alaska-based effort to raise money to find a cure for Parkinson's Disease, Doug Bahniuk ups the ante by planning to ride from the North Slope to Anchorage

Last summer Doug Bahniuk rode his bicycle from Fairbanks to Anchorage. This would not be a huge deal except for the fact that he was diagnosed with Parkinson's Disease around eight years ago. As it was, it still wasn't a big enough effort for Doug, who will push his PD limit out to a truly noteworthy new distance with his forthcoming attempt to ride 900 wilderness miles from Alaska's North Slope to Anchorage, its largest city.

Doug took time out from training, updating his website, and repacking his bearings to answer a few questions from Off and On.

1.) How much more difficult do you see this ride as compared to last year's sojourn between Anchorage and Fairbanks?

There is a huge difference. First is the distance: 900 miles vs. 400 miles. Then there is the road surface. A significant percentage (about 80%) of the road between Deadhorse and Fairbanks is gravel. Gravel roads are dangerous, because it's easy to slip and slide, and difficult to ride because of potholes. A big concern is the self-reliance issue. I have to carry enough food and water, or find water, to last five days. That's a big order. And while I only had to camp two nights last year, I expect to have to camp at least ten nights this year. And a lot of that will be in bear country. No, I'm not bringing a gun.

2.) What did you learn last year that will most change your approach to this year's ride?

The wind can be relentless. It's just brutal. So I'm trying to get (be) in better shape to deal with it.

3.) Could you give us a brief rundown on the gear you plan to take?

Batteries, soap, blue jeans, camera, camp stove, cell phone, cooking gear, flashlight, imodium, inner tubes x2, knife, light jacket, magnifying eye glasses, multi tool, Parkinson's meds, patch kits, penicillin, rain jacket and pants, riding shorts, shaving gear, spare shirt, sleeping mat and bag, tape, socks, spokes, string, tent, spare tire, tire pump x2, tooth brush and paste, toilet paper, wrenches, water filter/sterilizer, zip bags, candy bars and freeze dried meals. That's not everything, but you get the idea.

4.) What are you doing differently to prepare for the ride than a person without PD would do?

I've been experimenting with how long my meds last, and how I function without them. They seem to wear off in three hours; you could almost set a clock by that. It's very difficult for me to move without them, but I can do it. If I lose them or they get ruined, well, let's just say it's not good.

5.) What are you looking forward to most about the trip?

The scenery, the sense of isolation. Riding.

6.) What are you looking forward to least about the trip?

Rain! Lord, I hope it doesn't rain too much!

7.) Why a bike ride? Why not jog the whole way, or engage in a dance marathon for Parkinson's Disease Research?

Bikes are practical and open the world to you. Jogging would not be practical. A dance marathon is not my style; where's the danger? I don't really get into "team" sports, and to me, dancing, or similar efforts, is a team effort.

8.) Have you always been in love with bicycles?

My father bought me a blue, open frame (aka "girl's"), three speed "English Racer" for my third birthday. I learned how to ride it before I was four. I've been in love with bicycles since then. I can go anywhere on a bike. It takes time, but it gives me such a sense of control over my life to know that I can do that.

9.) So when you're out there on one of these expeditions, maybe a bit bradykinetic, (slowness that comes with PD) a little dystonic, (muscle cramps associated with PD) a long way from medical care and tired on top of all that, do you ever think "What am I doing here?"

Oh, absolutely! And let me add to the scenario: It's raining and I'm camping in bear country! Yes, I wonder what the heck I'm doing here! But I've learned to shrug it off, not feel sorry for myself, and concentrate on what I have to do. And I remember to feel joy. When all those things happen, I remind myself to feel pride, to enjoy the beauty, to enjoy the rain. I tell myself that I'm a tough SOB and I challenge the Gods to bring it on. I mean what's the worst that can happen? I sleep in a mud puddle? Been there, done it. I die? I've come to terms with my mortality and would rather go down fighting than in a hospice bed.

10.) Once you pull this off, what is next?

I'm not sure. Maybe I'll ride across Oregon again, I love Oregon. Maybe I'll just concentrate on raising funds for PD research. I doubt there will be anymore Alaska trips.

If you would like to contribute to the cause of ending PD through Doug's effort visit his website, where he has a variety of levels and ways to participate. To read an earlier Off and ON Q&A with Doug, check here.

Tuesday, May 10, 2011

More Parkinson's Info Coming at You! A "Webinar" from the Davis Phinney Foundation

Hello all, below is information from the Davis Phinney foundation about a "Webinar" information session that they plan to hold on the 15th of June. The time is set for 1:00 pm Eastern Standard time which makes it 9:00 a.m. Alaska time by my not-too-reliable reckoning :) The Davis Phinney foundation is a PD group started up by Olympic cycling champ and PWP Davis Phinney. Their focus is in helping people with Parkinson's live well and maintain themselves.

While techno-wiz is not one of the things that springs to mind when you think "Pete" I am pretty sure that I can stream this to my large screen TV if anyone would like to come by and watch it at my house. Warning: If you do come over, you may be licked by an extremely cute Dachshund. If you would like to come, please send me an email (dunlapshohl(at)gmail(dot)com) by June 1 so I may make all in readiness.

Your humble servant,


More than 4,500 people living with Parkinson’s have been inspired and challenged to take action as a result of attending the Davis Phinney Foundation Victory Summit™ symposium in cities across the US.

Now, this information and inspiration is coming to you in the first online event of its kind.

Tune in on June 15, 2011 at 1:00 pm EST for the


A Victory Summit and Panel Discussion Webinar on how to live well with Parkinson’s

• Featuring presentations and discussions with leading researchers and movement disorder specialists from around the country
• Covering topics like the latest in research and clinical trials, nutrition, exercise, how to communicate with your doctor and your family.
• And finally, giving you access to worksheets and tools to support you in your
commitment to live well today
Challenge yourself to live well today. Watch with a friend or loved one. Tell your support group and tune in together. Get the tools and information you need to live well today with Parkinson’s disease.
Register today by visiting their website and clicking on The Victory Summit page. Or call 1-877-274-7673.

Wednesday, May 4, 2011

Parkinsons Disease: A Mixed Cursing

Here's a headline from a recent story in the Washington Post "Having Parkinson's disease is nothing to celebrate". Well, no. In the article that follows, writer Phyllis Richman, wrestles with the question "What is the appropriate attitude to one's own debilitating chronic disease?" A good question. A question to which I could not find her answer in the story, only criticism of the answers found by others.

Richman writes "I gnash my teeth when I come across people with Parkinson’s (PWPs, as we call ourselves) who declare that it is the best thing that ever happened to them." She goes on to complain "Articles, blogs and books by PWPs too often aim at the wry and cozy. They conclude that Parkinson’s brought them closer to their loved ones and opened them to a deeper satisfaction. I recognize in these authors a desperation to find value in their 'challenged' lives."

Excuse me? Aside from Michael J. Fox I have yet to hear of one person who says PD is the "best thing that ever happened to them" One can only imagine how abysmal a life must be for one to consider Parkinson's a good deal. One has to imagine this in fact, because no actual person is cited or quoted.

Likewise her assertion about would-be wry and cozy books and blogs names no names and cites no example of these sad and desperate people trying to find value in their challenged lives.

I can't speak for anyone else, but I doubt that I was alone in looking for a way to understand the purpose and value of life long before I ever got my diagnosis. Having Parkinson's Disease poses those questions in boldface, but is this really different for those without this wretched condition? If you're not desperate at some level, you're not paying attention.

How many of us will be granted a long and happy life followed by a graceful and dignified death? Who can say they will rise from their bed tomorrow stronger, wiser and more beautiful? Much of literature, philosophy and religion is a struggle with these difficult truths and their implications.

Nascentes morimur - From the moment we are born, we begin to die. There are two possible responses, denial or engagement. It isn't surprising that those who engage with the question and choose to go on with the agonizing, absurd, and wonderful enterprise of life find meaning in it. Why would they continue if the honest answer is there were none?

Richman does name one person she disagrees with. She says Michael J. Fox went too far in titling his book "Lucky Man." She is free to believe Fox is mistaken, but of the two, who is in a better position to know? Did Fox go too far, or is it Richman who has not yet come far enough?

Having Parkinson's Disease can be a "mixed cursing". No, it isn't a joy to wake unable to walk or to speak clearly. It's no fun managing and paying for the pills that can deliver relief only on the installment plan. It's not jolly and life-affirming to stagger erratically down a hall tripping over a rug. It's demoralizing to find yourself drooling when you swore you would avoid it through conscious diligence. Certainly, as the headline says "Having Parkinson's disease is nothing to celebrate". If it were, why would Michael Fox and so many others be trying to end it?

That headline, like the story misses the point. Parkinson's is nothing to celebrate. But the courage, dignity and ingenuity with which people often respond to it is inspiring. The grace shown by people who have the disease and the compassion of those dedicated to helping them can be examples of humanity at its most attractive. We would be ingrates not to celebrate that.

Parkinson's Forecast for May in Southcentral Alaska

Hello friends, We're festinating forward into May with our usual festivities. May 9th will be the telehealth presentation "How to function safely in our surroundings", at Providence hospital. Look for this event in room 2401 in the new oncology building at 1:00 p.m. This will be followed with our monthly support group meeting May 21, at 3:30 in the Pioneer Home. I plan to present a live reenactment of Dr. Melanie Brandabur's wellness for PD talk at the recent Parkinson's Association of South Dakota Conference, from which I just returned. All the drama! All the laughs! All the Parkinson's you can stand!

Tuesday, April 26, 2011

Dr Demi-God, paging Dr. Demi-God... Helloooooo?...

Here is a refreshing look at the Doctor/patient relationship. (Hat tip to Bill Bell for flagging this.) I love the bit with the forklift. As much as we might wish that someone with the knowledge and power could lay a hand on our forehead and cast out our PD demon, it doesn't work that way. With this disease you can't afford not to step up and help out.

As people with Parkinson's we have to be unusually involved with our care. This is true because of three big factors. First, Parkinson's manifests differently in each person to such a degree that it can be difficult to standardize care. You have to be the authority on you. Second, if you haven't got access to a movement-disorder trained doctor you must take up as much of the information slack as you can. The unfair but unavoidable truth is that a general practice neurologist doesn't have the ability to dive as deeply as possible into the complexity that is Parkinson's when patients with everything from MS to migraines also need care. Third, let's face it, in our system we ration time with your doctor. You and your doc share the examining room with an invisible bean counter who is muttering in the background and pressuring your doctor to move on to the next patient. Even if your doctor is a demi-god, (hint: none are) This doesn't leave much time to pick their brain. So you get to be part of their brain instead.

And here is where something useful can happen. You demonstrate to your doctor that you have a good working knowledge of your disease as well as ideas about how care might go forward. This allows your doctor will see you more as partner in your care, someone to practice medicine with, not someone they practice medicine on.

If you are interested in finding information, where do you go? Two words: Support group. What? You want more than two words? Well you could always check out this post from a short while back.

Sunday, April 24, 2011

Pete's Parkinson's Portraits- Francisco Franco

Like Mao and Hitler, Franco was a brutal dictator of the Twentieth Century. Like them, he suffered from Parkinson's Disease. Franco managed to hang on from the thirties to the mid seventies, miring Spain in his iron grip. "Our regime is based on bayonets and blood, not on hypocritical elections" he boasted, backing it up with his feared police the Guardia Civil.

Franco became the leader of Spain after defeating the communists and anarchists in the Spanish Civil War. This war was seen by many at the time as a a critical battle in the world-wide struggle against Facism, prefiguring WWII. Because of this idealistic foreigners like Hemingway, George Orwell and Arthur Koestler went to Spain to fight on behalf of the anti-facists. Each came out of the struggle marked for the rest of their lives by the collapse of the forces allied against Franco.

Franco continues to haunt the image of Spain years after his death. Guillermo Del Toro's searing recent film "Pan's Labyrinth" was inspired by the post-war reign of Franco, who maintained power until his death in 1975.

Friday, April 22, 2011

After 16 Years Incomunicado, "Calvin and Hobbes" Artist Bill Watterson Emerges to Help in the Effort to Stop Parkinson's Diseas

(ABOVE) Portrait of "Cul de Sac" character Petey Otterloop, by Bill Watterson

Here is one more reason to revere Bill Watterson, creator of "Calvin and Hobbes". The reclusive cartoonist has contributed the first piece of art that the general public has seen from him in 16 years to the Team Cul de Sac effort to help the MJ Fox foundation in its efforts to cure Parkinson's Disease.

You can learn more from a Washington Post blogger Michael Cavna Here, or check out the Team Cul de Sac blog here.

Many thanks to Bill Watterson, a guy who knows when and how to break a long silence!

Monday, April 11, 2011

Upcoming PD Events For Anchorage

Hi folks,
Here's your Parkinson's breaking news bulletin for Anchorage and environs. Today (Monday the 11th) there will be a telehealth presentation at Providence hospital called "An overview of treatment options for PD". Look for this event in room 2401 at 1:00 p.m. That will be followed this Saturday by a support group meeting at our usual plush digs at the Anchorage Pioneer home. We are still hoping to nail down our Tai Chi speaker for that, but I do have a backup plan should that, if you'll pardon the expression, fall through.

See you at some or all of these fab PD events

Thursday, April 7, 2011

Can you Keep a Secret? It's Parkinson's Disease Awareness Month

Pssssst... keep it under your hat. Don't tell a soul. This is your-eyes-only stuff on a strictly need to know basis, and yes, I'll have to kill you after I tell you. Can you handle the truth? It is, believe it or not, Parkinson's Awareness Month.

Once again April, in all her cruelty, demands that an oblivious world divert its attention from the disaster in Japan, War #3 in Libya, and even the lovely locks of Justin Beiber to (ahem) us.

April is the time we are supposed to raise our soft slurred voices in a cry for attention. A cry to which the World will likely reply "What? Couldn't catch that. Come again?" And who can blame it?

With the thousands of worthy causes out there demanding attention through such tired devices as "awareness" months, how do we get the world to focus on our particular little tragedy? That is the question of the moment.

But is it the right question? Isn't a better question why should anyone care? Given all the other sad, desperate conditions and predicaments that humanity faces, what can and should we do to make it worth the World's time to devote its distracted mind and heart to us?

Let's begin convincing people PD matters by ditching Parkinson's Awareness Month. Reserving a month for PD awareness leaves eleven months for Parkinson's obliviousness. We need to let people know they should care about Parkinson's Disease year-round. How? For a start, if you are hiding your PD, come out of the closet and let people know. This is especially important for young-onset patients. I have met good doctors that couldn't believe I had PD because I'm "Too young". An invisible problem is not going to rise to the top of anyone's to-do list. You must allow people to see your predicament before they can feel compelled to confront it. If you're not part of the problem, you're not part of the solution.

So you boldly step out of the closet. That's a start. What next? You have to show you care. If you can't be bothered to resist Parkinson's Disease, why should anyone with a less obvious stake in the matter be bothered? If you need some ideas about how to do this, no worries, here are a few. Start a blog, volunteer as a PD research subject, join a support group, get involved in a fund raising event. With a little enterprise on your part every month will become Parkinson's awareness month. People will be eager to cure it just to make you go away.

Learn what you can do to take better care of yourself. Whether the Lord helps those that help themselves or not, I do not know. But I am convinced that people are more apt to help out when they see you are trying to make your situation better rather than shrugging your shoulders and waiting for the next blow. Get speech therapy, work those stiff and sore muscles with regular exercise. Eat right. Manage your medication well. Do your research and learn all you can about how you can function more effectively in spite of what this disease will do to drag you under.

Whew, that'll easily fill up a year. A person might be forgiven for wondering if there is no simpler way to inspire interest and compassion from a stressed out over-busy world. Actually there is. But it would be wrong to wish PD on Justin Bieber.