Off and On: The Alaska Parkinson's Rag

High Country: Whacked on Anesthesia, DBS Patient Has Visions

2012-01-25T13:03:00.000-08:00

Yes folks, it's another panel from the yet-unfinished-or-sold-blockbuster-graphic-memoir. In this thrilling episode, our protagonist has visions. But visions of what?... or should that be whom? Find out when you read the entire thrilling narrative of one man's adventures with Parkinson's Disease. Not sold in stores, or anywhere else. Yet.

A Team Cul de Sac Book update: Go ahead, laugh at Parkinson's Disease

2012-01-13T11:57:00.000-08:00

Team Cul de Sac, a project to raise money for Parkinson's research will bring out its book in June! The effort, helmed by the formidable Chris Sparks, is a book of cartoons that are a tribute to Richard Thompson, creator of the strip "Cul de Sac". Thompson is a cartoonist's cartoonist, and person with Parkinson's Disease. Contributors include Pat Oliphant, Garry Trudeau, Bill Watterson and a host of other extraordinary talents. You can find photos of much of the work here, including a portrait of Cul de Sac character Petey Otterloop by the reclusive Bill Watterson. The profits go to the Michael J. Fox Foundation. This has been a massive labor of love for Chris, and you can buy a special edition, if you're quick, by going here here It is rumored that the book will contain the image below, attributed to an obscure cartoonist who lives far, far away.

Coming Soon to a Location Near You (If You Are Near Anchorage)

2012-01-04T11:28:00.000-08:00

Here comes the next telehealth seminar. It's Parkinson's and music therapy. Learn how music is being used as therapy to address physical, emotional, cognitive and social needs. It will be presented by Bill Dluhosh, MT-BC Music Therapist. The broadcast can be seen here in Anchorage on January 9, at 1:00pm, 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.We will have our regular meeting on the 20th, fifth floor of the Pioneer home, 3:30, subject to be announced.

Reworked Page, Trying to Get Blockbusting, Brawling , Sprawling Parkinson's "Graphic Novel" Right

2012-01-01T14:28:00.000-08:00

What was the problem with the page I posted yesterday? Too much talking and too little showing. We graphics novel author wannabes are supposed to trust the picture as a narrative tool. And besides, bouts of dyskinesia aside, drawing is fun. So I went back, took out some words and put in some pictures. Et voila! One page became two. Then I showed them to Pam who had some constructive criticism. So I went back and reworked them again. I'm trying to bear in mind the words of economist J.K. Galbraith, who said (quoting from memory here) "The note of spontaneity that people praise in my writing always emerges in the fifth draft."

Zap! Pow! FZZZZZT!! Daring UFO rescue of Parkinson's Patient. Pushing Ahead With the PD Graphic Novel

2011-12-30T09:51:00.000-08:00

If Parkinson's Disease does nothing else, it certainly adds drama, No? Click on the image to enlarge.

He Won't Get Far on Foot...

2011-12-28T17:17:00.001-08:00

(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".

Comicization of a (Relatively) Recent Post

2011-12-18T12:06:00.000-08:00

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".

The December Parkinson's Report

2011-12-07T18:43:00.001-08:00

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.

Thar She Blows: Another Peek At My Graphic Novel Manuscript

2011-12-03T13:28:00.001-08:00

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.

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

2011-12-01T08:44:00.001-08:00

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.

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

2011-11-14T11:31:00.001-08:00

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.

Yikes! A scary New Page

2011-11-08T15:11:00.000-08:00

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!

Latest page

2011-10-22T18:56:00.000-07:00

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.

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

2011-10-15T10:14:00.000-07:00

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 possibleVision 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 eyeSclera: 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.

October Meeting (and a look ahead to November)

2011-10-13T14:20:00.000-07:00

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

"I pulled on a thread...

2011-10-11T09:32:00.000-07:00

... 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.

Book report: One page at a time

2011-10-05T09:59:00.000-07:00

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.

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

2011-09-19T00:08:00.000-07:00

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.

A Mercifully Short History of Bad Ideas

2011-09-11T10:38:00.000-07:00

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.

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

2011-09-04T18:03:00.000-07:00

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...

Classes for Alaskans Dealing With a Chronic Disease

2011-09-01T13:18:00.000-07:00

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 info@alaskamscenter.org .

--

The Alaska Multiple Sclerosis Center (AMSC)
907-929-2567
3340 Providence Drive Suite 552 (Tower A)
Anchorage Alaska 99508

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

2011-08-28T16:16:00.000-07:00

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:

Online: www.nwpf.org
Call: 1-877-980-7500
Email: alecha@nwpf.org

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

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

2011-08-22T16:44:00.000-07:00

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

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

2011-08-19T10:42:00.000-07:00

(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?

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

2011-08-14T22:06:00.000-07:00

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?

A 900 Mile Message

2011-08-11T14:36:00.000-07:00

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.

The Doug Has Landed !

2011-08-07T18:18:00.000-07:00

Doug made it! (As seen from the warmth and comfort of our car.)

August Alaska Parkinson's Calendar

2011-08-05T18:48:00.000-07:00

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!

Time to Take Your Diet Bat-Free

2011-07-31T09:05:00.000-07:00

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?

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

2011-07-29T14:41:00.000-07:00

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!

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

2011-07-27T18:25:00.000-07:00

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.

Alaska Parkinson's events for July

2011-07-07T21:46:00.000-07:00

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.

Onward.

Peter

Scariest Word in the English Language: Yes

2011-07-04T15:42:00.000-07:00

"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.

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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.

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

2011-07-03T17:44:00.000-07:00

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.

The Re-Animation of James Tim Walker

2011-06-26T10:13:00.000-07:00

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.

Questionable Taste: Culinary Adventures With the Parkie Chef

2011-06-12T15:08:00.000-07:00

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.

Nailing Down That Parkinson's Diagnosis

2011-06-07T09:12:00.000-07:00

Doug's Wild ride, Update

2011-06-04T07:39:00.000-07:00

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.

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

2011-06-01T10:07:00.000-07:00

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,

Peter

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

2011-05-25T12:27:00.000-07:00

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.

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

2011-05-20T11:27:00.000-07:00

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.

Have I nagged you to exercise lately?

2011-05-15T09:49:00.000-07:00

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.

Doug's Wilder Ride

2011-05-14T18:10:00.000-07:00

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.

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

2011-05-10T08:36:00.000-07:00

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,

Peter

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

LIVING WELL CHALLENGE:

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.

Parkinsons Disease: A Mixed Cursing

2011-05-04T14:12:00.000-07:00

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

2011-05-04T09:39:00.000-07:00

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!

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

2011-04-26T11:54:00.000-07:00

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.

Pete's Parkinson's Portraits- Francisco Franco

2011-04-24T17:03:00.000-07:00

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.

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

2011-04-22T15:09:00.000-07:00

(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!

Upcoming PD Events For Anchorage

2011-04-11T09:25:00.000-07:00

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

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

2011-04-07T15:19:00.000-07:00

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.

Another Walt Whitman Moment ("I celebrate and sing myself" yet again)

2011-04-03T13:22:00.000-07:00

Hang on to your gag reflexes while the Off and On Promotions Department issues the following press release...

OK, let's get this over with quickly, minimizing our mutual discomfort at naked, opportunistic self promotion.

TheAlaskaPressClubhashonoredtheblogOffandOnwithfirstplaceinthecommentaryblogcategoryforworkdonein2010.ThisisabigdealforPeterwhoissoexcitedthatheisevennowcomposingaselfaggrandizingpressreleasewhichhewillsoonposttotheaforementionedblog.

Whew, thank heavens that's done. The management here at Off and On appreciates your forbearance in this matter, and expects to refrain from this sort of behavior for at least a year, and probably longer. Thankyou.

Smiley Crisis

2011-03-24T10:07:00.000-07:00

Smiley faces may look innocent, even bland. Don't let the little bastards fool you. That innocuous icon can plunge an unwary soul into startling existential awareness, ripping off the band-aid of denial with a smart sting. One moment you are methodically filling out an online form, the next you are confronted with the unwelcome shock that your relation to reality has significantly shifted without you noticing.

Here's what happened. I have been using the online tool I mentioned a few posts back to track my medications against my on-off cycle. I had run through the process several times and it was becoming familiar. I came to the final step where the program asks you to give a general snapshot of your "wellness" by clicking one of three icons. The choices are a smiley face (feeling good), a non-committal neutral face (feeling average), or a frownie face (feeling bad).

I was about to pick the smiley face when it hit me. Whoa, not so (relatively) fast Parkie boy. You feel good compared to what? The fact is that with PD, I am more likely to aspirate saliva and erupt in a coughing spasm, more apt to have difficulty speaking and being heard, subject to weird involuntary motions if over medicated, and unable to move normally if too far between doses. Yet at that moment, despite whatever symptom I was experiencing, I honestly thought I felt better than average.

That's when I realized how far I had come in incorporating my illness into my self. A different, healthy me who was experiencing the symptoms that I felt would have chosen the frownie face. That is, I would have chosen Mr. Frownie after a quick search for the sheer primordial panic face. But the person that I am, having lived now for more than nine years with various symptoms, has evolved a new scale for quality of life that locates "good" where it's safe to say most healthy people would find the opposite.

Humans are adapters. That's why we're found everywhere on Earth in all seasons, from Point Barrow in January to the Sahara in August. Where adaptation calls for moving we become nomads. Thoreau wrote that he had traveled extensively in Concorde. I've come farther than I ever suspected in Parkinson's Disease.

PD Pop Quiz (and a question for support group leaders)

2011-03-20T11:43:00.000-07:00

To misquote David Bromberg "there I was again right where I Knew I shouldn't be". It was hours to meeting time and thanks to laziness I didn't have any plan for the support group activity. This left me with two options. I could stand up in front of the members and tell them straight from the shoulder that once again Generalissimo Pedro had dropped the ball, trying to keep a brave face while they tore my stripes off. We'll call this option 1. Option 2 was to improvise something at the last minute and try to make it look like I had planned it all along. The human heart being what it is, I opted for #2. This is called turning a problem into an opportunity. Although the two look much alike at this stage.

Really it's turning the problem into an opportunity to turn the problem into an opportunity. Creating the opportunity is now the problem. Somehow in that pregnant moment when irresistible force (laziness) smacks into immovable object (meeting time) out of the chaos springs an idea: The PD Pop Quiz! A little brainstorming on content and presto- instant meeting. Here it is:

PETE'S PD POP QUIZ (Answers at the end of this post)

Three early signs of Parkinson’s Disease Are A: Slowness B: Dementia C: Loss of sense of smell D: Tremor predominantly on one side E: Hair loss

Which symptom does not respond to treatment with sinemit? A: Tremor B: Loss of balance C: Slowness and stiffness

True or false: PD is contagious ( ) T ( ) F

True or false: The most noticeable effects of PD are caused by the loss of the neurotransmitter seratonin in the brain ( ) T ( ) F

An rare side effect of some PD medications is A: Offensive body odor B: Sex or gambling addiction C: Flatulence

True or false: Voice therapy is useless in PD ( ) T ( ) F

True or false : If I have PD, I should quit exercising ( ) T ( ) F

The tiny handwriting of people with PD is called_____________________

Scientists now believe that Parkinson’s is underway in the body (A) 6 months (B) 1 Year (C) more than a decade before it is commonly diagnosed.

True or false: PD is a disease of the old ( ) T ( ) F

A diagnosis of PD is a death sentence ( ) T ( ) F

The part of the brain where cells are dramatically lost in PD is called the
A : Cortex B: Hippocampus C: Substantia Nigra

DBS is the acronym for ___________________________

True or false: PD is curable with present medication ( ) T ( ) F

True or False: PD is treatable ( ) T ( ) F

Extra credit: PD is better than A: A sharp stick in the eye B: A sharp stick in the brain C: A dull stick in the eye

So why am I bothering you with this beyond showing off? Well, because the stupid thing made for a surprisingly good meeting. People seemed to enjoy the challenge of the test and, more important, when went we went through and graded it, each item provided a jumping-off spot for questions and discussion. By the time we got through it, most of our meeting time was shot.

So support group leaders, you are welcome to use it, Clip'n'Save for the next time you are caught without a topic. It's my gift to you. And it comes with a question: what's your suggestion for fruitful support group sessions beyond booking some excellent speaker? What have you done that gets your group members talking and sharing? Lazy as ever, I await your replies, please post to the comments section or by email to dunlapshohl(at)Gmail(dot)com.

Oh yeah, the answers:

Three early signs of Parkinson’s Disease Are A: Slowness C: Loss of sense of smell D: Tremor predominantly on one side

Which symptom does not respond to treatment with sinemit? B: Loss of balance

True or false: PD is contagious ( ) F

True or false: The most noticeable effects of PD are caused by the loss of the neurotransmitter seratonin in the brain ( ) F

An rare side effect of some PD medications is B: Sex or gambling addiction

True or false: Voice therapy is useless in PD ( ) F

True or false : If I have PD, I should quit exercising ( ) F

The tiny handwriting of people with PD is called Micrographia

Scientists now believe that Parkinson’s is underway in the body (C) more than a decade before it is commonly diagnosed.

True or false: PD is a disease of the old ( ) F

A diagnosis of PD is a death sentence ( ) F

The part of the brain where cells are dramatically lost in PD is called the C: Substantia Nigra

DBS is the acronym for Deep Brain Stimulation

True or false: PD is curable with present medication ( ) F

True or False: PD is treatable ( ) T

Extra credit: PD is better than A: A sharp stick in the eye B: A sharp stick in the brain C: A dull stick in the eye

Parkison's Prognosications for the Southcentral Alaska Area

2011-03-13T14:48:00.000-07:00

It's Parkinson's prognostication time again, in which your humble seer looks boldly into the future and divines what awaits those of us of the Parkie persuasion for the month of March. I see... a darkened room... a room filled with people staring intently at a screen... Yes! it's another Telehealth conference at the new oncology wing of Providence Hospital, room 2401 this Monday, the 14th of March at 1:00. The topic this go-round is PD and sexuality. The presenter is Kristoffer Rhoads, PhD, neuropsychologist For more info, call: 1-877-980-7500

Looking even farther into the mists of time, I see the fuzzy outline of a support group meeting coming up this Saturday, the 19th of March. I hope the topic for this meeting will be Tai Chi for PD, but have yet to hear back from our prospective guest. If the speaker falls through, we'll enjoy a presentation on... er, something else...
The mists of time are becoming opaque... my sight fails... that appears to be all that I have for you. I look forward to seeing you at these events. Until then, festinate forward!

Team Cul de Sac update: Cartoonists Begin Sending Artwork

2011-03-09T10:16:00.000-08:00

Drawings from cartoonists are starting to come in to the cartoonist's campaign against Parkinson's Disease. The plan is to combine the drawings into a book to raise money for the Michael J. Fox Foundation. The effort is led by the indefatigable Chris Sparks, who was motivated by the PD diagnosis of his friend, Richard Thompson. Thompson is the creator of Cul de Sac, one of the brightest lights in the recent history of newspaper comics. Contributing artists are invited to use the characters from the strip in their contributions for the book. At left is a picture of one of the leading characters, Alice, as drawn by Thompson. (You can see my donation here) Preview the recently contributed art at the Team Cul de Sac blog.

UB the Brain Surgeon

2011-03-08T11:04:00.000-08:00

As both an animator and a Deep Brain Stimulation surgery patient, my hat and bits of my scalp are off to Edheads for this interactive demonstration of how DBS is done.

This is not for the squeamish, but if you're not bothered by a little virtual blood you can pick up a virtual scalpel and scalp a virtual lawyer. Along the way, you'll get asked questions, "handle" high-tech equipment, and gain a better understanding of both DBS and why you weren't cut out for medical school. I was so enthralled I almost missed my scheduled meds.

This particular version of the operation is broken into different stages where parts of the operation are separated by days. Some doctors do all phases in one long operation, and correct me if I'm wrong, but I believe Dr. Philip Starr of UCSF has now managed to perform the operation without the necessity of waking the patient to check placement. But this is still pretty state of the art, and if you don't come away with a better general understanding of DBS, your tuition to medical school will be cheerfully refunded.

Winnowing the Web for Parkinson's Disese information? Here are some places to start (updated 5.6.2011)

2011-02-25T13:45:00.000-08:00

The Web is a rich source of information and misinformation on Parkinson's Disease. While you can get the latest info by surfing the internet, you are at the mercy of the the information source. How do you assure it is reliable? I know of two attempts to assess Web resources that seem helpful and credible. No matter where you get your PD advice, before making any major change in how you handle your case discuss it with your movement disorders doctor. That said, here are two guides to PD resources on the World Wide Web.

Heather Trotter over at healthcaretechnicians.org has gone through quite a bit of trouble to seek out and evaluate various PD blogs on the Web, and has come up with a list of her top 49. How do I know she went to a great deal of trouble? Well, she found and read enough of "Off and On" to pick it as one of her favorites. This afforded her instant credibility with me, but you can size up her effort yourself by going here to check her picks.

The second example is the index created by the Parkinson's blogger Bibmomma. If you would like to see a round-up of PD blogs put together and screened by a smart and motivated patient, check out her exhaustive list here.

Where do I go to get my PD information? My doctor is number one, but here are some other resources I find useful. One hard-headed source is Viartis. This a reliable and up-to-the minute place to go. Not always encouraging, but always informative. You can find a link there that will allow you to get email updates when new posts go up. I also have a google alert set up that comes twice a day with a round-up of news from around the Web about PD. This is a source that picks up almost anything PD-related without judging its credibility so I bear that in mind when scanning it. For those that have had DBS or are considering it, I have found the yahoo DBS-discussion group to be invaluable. It is monitored and contributed to by well-informed and savvy people. There is a sign-up there for email versions. I like the digest, which keeps the flow of email manageable. Finally, I have high hopes for Dopadoc, maintained by Dr. Marshall Davidson. This is a new site run with considerable energy and great knowledge of PD lore. Be forewarned: Dr. Davidson is opinionated and not afraid to speak his mind. I do not always agree with him, but he is forthright and stimulating. (full disclosure: Dopadoc has run my stuff recently).

Certainly there are other Web sources of good (and bad) information. These are only the ones that I find most credible and most suited to my needs, standards and tastes. If you, gentle reader have some other source you find irreplaceable, I welcome your posted response.

UPDATE: Dr. Monique Giroux is working with the Northwest Parkinson's Disease Foundation to provide wellness information to Parkinson's patients. This is info on maintaining health and quality of life tailored to PD patients, and it is a trove of good advice. You can find it here.

Terrific tool to help with your on/off cycle

2011-02-20T11:19:00.000-08:00

One of the joys of blogging is coming across a note like this in your inbox:

"I am the sister of a young onset patient, dxd about 15 years ago in her 30's. This past year, she started having real trouble with the on/off cycle. She and I wrote a web app for her to track her meds and her on/off etc... It worked great, her doctors loved it, and she was able to get some really useful interventions out of it.

We want to make it available free to the PD community. It is also an anonymous log in - so no worries about personal information getting into the wrong hands.

I'm hoping you will check it out, and if you find it worthwhile, write a little blurb about it on your blog."

The the site is here

I looked it up and it seems to be just what it purports to be, a nifty tool that people just like the rest of us (only smarter) have put at our disposal to make life a bit more manageable. Thank you Meg, may your ascent to heaven be carpeted with Parkinson's tulips

A New Off and On Feature: More Good News for Rats

2011-02-06T22:12:00.000-08:00

I am breathless with excitement to report a significant breakthrough in the struggle against the scourge of Parkinson's Disease. Some clever scientists managed to slip stem cells up the noses of some of those afflicted with this tenacious and destructive disorder. Stem cells migrated to the brain when put up the nose! Who woulda' thunk it? Hmmmmmm, when you do think of it, what else would you do? Hang around in the nose, or move right along to somewhere a little less full of snot and germs? Thought so. But once again, I digress. Back to the matter at hand.

I wasn't the only excited one. The editors of the Web site of Medical News Today, marked it an Editor's Choice and ran it under the headline "Promising new treatment for Parkinson's Disease" (you can find it right here) The article proclaimed

"Stem cells, delivered intranasally, were found to substantially improve motor function in Parkinson's disease in a study co-authored by William H. Frey II, Ph.D, Director of the Alzheimer's Research Center, part of HealthPartners Research Foundation. Frey collaborated with Lusine Danielyan, MD, of University Hospital of Tubingen in Germany"

But wait, there was more!... the article continued, declaring the researchers "went on to study the therapeutic impact and long-term survival of the stem cells after they reached the brain. Their new study was published today in Rejuvenation Research. Then I got to the paragraph that tempered my wild enthusiasm:

"Using a rat model of Parkinson's disease, the research demonstrated that many of the stem cells delivered intranasally survived for at least six months in the brain; that the stem cells rapidly migrated preferentially to the damaged areas of the brain; and that motor control showed significant improvement."

So break out the Champagne, you furry little rodents, once more it looks like you have the inside track on a possible meaningful advance in the treatment of PD. In rats, anyway. People are another matter. The editors of the Web site should know this, and it would have been nice if they would have made it clearer sooner that they were reporting on an preliminary stage of this interesting research that may, or very well may not, mean much to humans who have PD. But I don't want to spoil the party. Live it up, rats.

February PD update for Anchorage

2011-01-31T12:19:00.000-08:00

Hello friends. Here is what I know about the local PD scene for February. The telehealth seminar will happen on Feb 14. the topic: Gamma Knife surgery, when DBS is not an option. Everyone who is familiar with the Gamma Knife procedure, raise those hands. Great. I will see the rest of you at the presentation. It takes place at 1:00pm, Providence Hospital room 2401. For the curious, you can look here for a basic outline of what Gamma Knife is.
Our Feb 19th monthly meeting will be an audience participation deal. Think of your best PD-related story, something that you experienced as a result of your PD that really made you think, laugh, get mad or get smarter about PD. This will be a great chance to exchange PD lore and expertise among the group. Regale us with your tale! I hope to see (and hear) you this February.

For caregivers, I believe Betty will be on hand to lead you in a separate session.

A Cartoonist's Cause (Cross post from "Frozen Grin")

2011-01-26T09:59:00.000-08:00

(Click image to enlarge.)

I've come across another place where Parkinson's Disease overlaps cartooning. Richard Thompson, a talented cartoonist and the author of the "Cul de Sac" comic strip has announced that he is also in the early stages of the post-diagnosis phase of the disease.

Unfortunately this insidious disease inflicts much damage before it is detectable. Parkinson's Disease is like a slow-moving brain injury that eventually robs its victims of the ability to initiate voluntary movement- to walk, to speak, to draw. There is no cure. However with careful management of the medications, diet, and exercise there is every hope that Richard will be able to produce his beautiful drawings for many years.

In the meantime, Richard's friends have organized a fund-raising effort on behalf of research into Parkinson's Disease through The Michael J. Fox Foundation Cartoonists are asked to contribute artwork for a book and auction to fund the cause. If you're not a cartoonist, but want to help, there is a button there which you can press to donate money.

For the theme of the book, cartoonists are invited to use the Cul de Sac characters as they will in their own artwork, interpreting them freely. My contribution appears above.

Me and Wii (part five: Flying disembodied Panda Heads)

2011-01-20T10:55:00.000-08:00

Part freakin' FIVE? I agree, this is taking things a little far, and I promise to move on in the next post. Just hang in a bit longer while I wrap things up. The motivation for this series is serious. There have been many recent articles on how great the Wii is for people with Parkinson's Disease. Check out my favorite, courtesy of the British tab The Sun Banker stopped Parkinson's Disease by playing on Wii (thanks, Jo). This article touted the Wii's miraculous healing powers as being just short of those of the deceased Pope John Paul II, who is inching toward canonization thanks to his alleged miraculous cure of a nun supposed to have Parkinson's. No word yet whether there was a Wii involved.

Aside from the hype, why care about the Wii? First, many people with Parkinson's are unable or unwilling to leave the house for exercise. The Wii allows one to exercise at home, and in case you didn't hear me the first three (thousand) times, exercise is critical to managing PD. Second, one of the categories of skill the Wii tries to work is balance. Balance is a big area of concern to those of us who have PD. It is also one of the more intractable sides of the disorder. When I ask experts about what we can do maintain balance, there is little they can offer. The most practical advice came from a neurologist who advised honing your balance skills before falling becomes a problem. His idea is that if you "overcompensate" up front in the balance area you will have a longer glide-path down than if you neglect these skills before they are seriously menaced by PD.

This leads me to my two questions about the Wii. The first question: Is it interesting enough to keep a person exercising at home? The second: Can the Wii fortify balance in PD patients significantly over time? Alas, the answer to both these questions as tested unscientifically by one person with a huge stake in the answer will not be conclusive. One person is a pitifully small study sample and there are no control subjects. But with Parkinson's so much that is unknown that those of us afflicted must play our hunches as much as we responsibly can. With that in mind, this series will continue. But not until I get a significant amount of time under my belt with the thing so that I can render, perhaps, a little judgment on those questions.

In the space of a month, what have I learned about the Wii? There are a great variety of activities. This bodes well for prospects of continuing to exercise without being derailed by boredom. The experience can have a striking resemblance to reality. Ironically this is especially vivid when something surreal is happening, like getting struck in the face by a flying, disembodied Panda head. And one can genuinely work up a real sweat exercising with imaginary companions. There are certainly aspects of the Wii that are off-putting. Call me oversensitive, but I find garish color and cloying graphics well, garish and cloying. But so far, on balance the machine is ambitious and successful as one part of my exercise routine.

Jim Kerr and the Amazing Flying APDSG

2011-01-17T11:38:00.000-08:00

Anchorage Juggler Jim Kerr visited our support group with tips on balance and stretching. One tip we all agreed to immediately: Avoid stilt walking. We put this into practice right away and not one of us had been on stilts since. Thanks, Jim!

Me and Wii (part four)

2011-01-09T20:15:00.000-08:00

(Want to start with part one? It's right here.)

I should have seen it coming. The warnings were in plain sight, and I thought I was being careful. Still, I wasn't prepared, and Wii treachery took me by surprise when it struck with brazen impunity.

So what happened? Well, there I was, running in place in our living room, enjoying a fine view of the virtual scenery as it rolled past, along with the friendly attention of the animated joggers, strollers and sundry passers-by, and marveling at the fact that none of the animated dogs running free in this best-of-all-possible-worlds ever soiled the candy-colored landscape.

The Wii was annoying me by harping on how I was not maintaining a steady pace. I was actually having a borderline "off" period, my meds flickering, and at times my legs would refuse to pick my feet up from the floor. When my feet stuck to the floor I would resort to a pitiful hopping motion to fool the sensor into thinking I was running.

Then the meds kicked in and I picked up the pace. The Wii was not pleased. "you're going too fast!" it warned, assuming its "Hal 2001" persona. "Yeah, and you're playing insipid music and projecting cheesy graphics, but do I criticize you?" I thought to myself, (And, for those of you objecting out there that I am criticizing the Wii right now in this very post, hush! Whose side are you on?)

That's when it happened. Just to show which of us was the boss hog of this house, I upped the "speed" and my avatar sprinted across the screen for the finish line. And the Wii tripped him!

Incredulous, I stared at him/me sprawled on the path. The other figures in the area all ignored the crumpled form, obviously afraid of incurring the wrath of the Wii and suffering a similar fate. Indignation replaced shock and I jogged the final steps to the finish. Maybe there's more Sadistic Gym Coach With a Beer Gut and Precambrian Sense of Humor in the Wii than I thought.

Want to Help make an Inspirational Documentary About A Parkinson's Patient?

2011-01-08T16:35:00.000-08:00

The movie trailer above is for an unfinished documentary about a South Dakota man who has advanced Parkinson's Disease. He still rides his bike (a sleek three-wheel recumbent) as he commutes to his bakery. Now he plans a ride 300 miles across South Dakota to inspire others with PD, and without it.

The documentary makers are raising money through Kickstarter. The filmmaker, Andrew Rubin recently wrote me to say "The film is endorsed and working with the National Parkinson Foundation, the Davis Phinney Foundation, LSVT Global, and other organizations. Our Executive Producer Stephen Nemeth has produced a vast range of socially conscious films such as Academy Award nominated War/Dance, Fuel, Flow and more. Finally, we are fiscally sponsored by the International Documentary Association a 501(c)(3) arts organization. "

If all this seems bona fide to you, and you would like to help get the film finished, click here to learn more.

Me and Wii (part three)

2011-01-08T09:58:00.000-08:00

Now we're getting somewhere. I finally worked up a sweat with my machine. Who would have guessed that Hula Hooping was so aerobic? Or so maddening. Having PD really brings out the bumps and the grind of the old bump-and-grind. What looks so easy to do is mysteriously difficult for me. And seriously addictive. I went for 45 minutes, by the end of which I was panting and sweating.

Those 45 minutes were logged desperately attempting to keep the damn hoop from trickling out of momentum and spiraling down to my ankles, whereupon my avatar (the figure representing me onscreen) would look a mite sheepish and affect an unfazed attitude while a sign flashed "Failed... Failed... Failed". Ouch.

The Wii seems to have a split personality. The machine has several ways it tries to make nice. A recurring figure as you go through the various menus and activities is an animated version of the balance board that is obsequious and eager as a puppy, all quivers and goo-goo eyes. And as you struggle with activities helpful tips appear onscreen "The trick is to swing your hips in a neat, wide circle" Then out of nowhere, Dr. Jekyll morphs into Mr. Hyde. The machine turns around and brutally labels you a failure for not being able to magically keep an imaginary hoop of plastic out of the clutches of imaginary gravity. One expects to look down suddenly to find the obsequious imaginary balance board having an imaginary go at one's imaginary leg.

I'm beginning to feel a little like John Henry, the steel drivin' railroad man, competing with the steam drill with his human dignity on the line. How about it, Wii? Why not offer spike driving as an aerobic choice? Hammer's gonna be the death of me, Lord, Lord, Hammer's gonna be the death of me.

(Looking for part one? It's right here. And part two? That's here.)

Me and Wii (part two)

2011-01-04T14:59:00.000-08:00

(Want to read part one first? find it here.) Undaunted by my first round of insults and humiliation, I returned to my Wii for more fitness fun. Chastened and a bit guarded as a result of my first encounter, I turned it on and prepared to work up a sweat. Things got off on the wrong foot when it noted that I hadn't been using it for a day or so, leaving the unspoken accusation that I was less than serious about my desire to reach the goal we so painstakingly agreed on during my first session. There being no way of registering excuses on the machine, I couldn't protest that I had in fact been working out on my trusty and discreet elliptical trainer. There was no way to disabuse the Wii of the notion that I had been slacking.

Anxious to prove how eager I am to do better, I attempted to cut to the chase and exercise. Once again I was sidetracked from this simple goal by the machine. It now wanted me to pick a personal trainer. I had my choice of bland young male virtual trainer or bland young female virtuall trainer. Sadly, sadistic gym coach with a beer gut and Precambrian sense of humor was not one of the options. Ah well, there are parts of my youth I'd just as soon not recapture. I picked the bland young man and selected Yoga for the activity.

I did some elementary poses, the machine assuring me from time to time that I was doing well. But instead of achieving inner peace, I attained only inner peace's evil twin, inner boredom. So I swapped in the disc with the winter games on it and ran a few dozen trips down the giant slalom course. After numerous high-speed misadventures which in the real world would have left me maimed or worse, I believe I found one way that the world of virtual exercise surpasses the real one: Virtual pain is preferable to real pain.

Deprived of the ability to inflict physical pain, the ever-resourceful Wii resorted again to mental cruelty. My avatar, the figure which represented me on the screen, would make one of our typically disastrous runs, missing gates and straying into the fence line (the death count among innocent bystanders would have been impressive in a more violence-oriented game where senseless killing is rewarded with points. Unfortunately, there is no "Wii Ski-Halo, Alpine Mayhem", at which I would excel). At the end of the run, after crossing the finish line in disgrace, my avatar would pump its little virtual fists and carry on as if it had just established a new world's record. Was this merely clueless or devastatingly sarcastic? Whichever, it was certainly embarrassing.

Let's be charitable. There is another possibility. Perhaps it was thanking the Silicon Gods that, given my skill level, it wasn't being loaded into a tiny cartoon ambulance and rushed off to a virtual hospital where it would languish for months on virtual life support until its stricken family agreed it was never going to wake up from its electronic coma, and pulled the plug. Feeling merciful, I didn't pull the plug, but I did turn it off.

Support Group Update for January

2011-01-03T11:13:00.000-08:00

Hello friends, Yes it's time for the January PD update. It's a bold new year and your support group motto for 2011 is "No Fear!" Our next meeting will be January 15. Our guest will be juggler Jim Kerr, who will provide us with tips on balance. That's Jim in the clip above juggling fire, and the background music is also Jim, conjuring up musical fire. You can see that this will be a meeting you won't want to miss!

On January 10 there will be a telehealth presentation at Providence hospital called "Take charge of your medications". Look for this event in room 2401 at 1:00 p.m.

Best to each of you in 2011,

Pete

Me and Wii (Part One)

2010-12-23T18:14:00.000-08:00

I'm old enough to remember when television was supposed to be bad for us. I'm almost old enough to forget this as well, but let's not dwell on that sad state of affairs. Instead, I want to dwell on a different sad state of affairs. Now where was I?... oh yes, TV... Nowadays we don't have mere television, we have interactive video gaming, which is supposed to help us parkies with balance and fitness. It's TV that, darn it, is good for you! Ever eager to mix the unmixable, in this instance fun, and Parkinson's Disease, I obtained a Wii and a balance board. I then plugged in, turned on, and prepared to enjoy a rollicking workout.

The Wii had other plans. It began by asking me a series of questions about my height, age, and weight. Then it asked me to step up on the balance board while it did a little calculating. That done, it proceeded to tell me I am 22 pounds overweight and 65 years old in Wii Years! I'm 52.

You know you are living in modern times when your possessions can insult you.

A bit nonplussed, I let it slide and prepared to take a simple balance test. I don't mean to brag but I think that my balance is pretty good, considering my circumstances. I felt confident about my performance on the test. My machine begged to differ "I guess balance is not your forté" the machine informed me, dripping cyber sarcasm all over my misguided little sense of adequacy. I had to check the game box and make sure I didn't have a copy of "Wii Insult Comic" but it assured me that I had "Wii Fit".

Then the machine turned all fake-concerned and asked me if I wanted to lose weight, and if so, how much and how fast. This led to protracted negotiations and much refinement of my button-pushing skills. Great way to lose weight, button pushing. Finally we arrived at mutually agreeable goals. I was left to reflect that I never got along with coaches well, and in that sense, virtual reality was eerily similar to real reality. The main difference was that instead of being abused by a hairy man with a huge beer gut and a Precambrian sense of humor, I was being abused by a virtual icon of a piece of plastic electronic equipment with no beer gut and no sense of humor. It was then I remembered my forté, and, coordinating my deft right arm with my exquisitely nimble 65- year-old hand, I turned the little SOB off.

"We Are All Entitled To Move" Mark Morris' Modern Dance Troupe Teaches People With Parkinson's to Reclaim Motion

2010-12-22T09:20:00.000-08:00

Thanks to Celete Huber and my brother Dave for flagging this for us.

Pete's Parkinson's Portraits- Terry Thomas

2010-12-21T10:06:00.000-08:00

Terry Thomas was a British comic actor. According to Wikipedia, he was especially well-known for his work in the 1960's films like "Those Magnificent Men in Their Flying Machines" and "Monte Carlo or Bust". He was noted for his roles as a classic British upper-class cad and bounder.

Telling Our Story, Telling it Well

2010-12-13T17:03:00.000-08:00

Just when your jaded view has almost permanently hardened, along comes something so well done and so true it shocks you into a new appreciation of the reach of human creative expression. This is a video from the recent World Parkinson's Congress in Glasgow, Scotland. The Congress invited people to submit videos to dramatize and explain Parkinson's Disease " to raise awareness about Parkinson's and to put a face on the disease while having a little fun at the same time. Nearly 50 people from 15 countries submitted videos". This entry from dancer Pamela Quinn tied for the top spot. You can find links to all the videos here

Among The Lucky Of The Unlucky

2010-12-10T07:44:00.000-08:00

"An ambulance can only go so fast" - Neil Young

Our band was taking a quick break, a man jumped on stage and took my hand. "I heard you on the radio he said. Then he dumbfounded me by calling my interview "Brave".

Brave? Me?

You must have me confused with someone else. Someone with nothing to lose. Someone who isn't worried every day that he is finally seeing the end of his ability to drive, to draw, to write, to make music, to make love, to do, to be. Someone like... whom? Like someone who hasn't been paying attention.

I've been paying enough attention to realize I am at least among the lucky of the unlucky. I respond well to the medications available. We have the insurance to pay for expensive pills and surgery. With continued luck and discipline, the worst will be held at bay while I go on appreciating what my friend Janet calls "The finer miseries of Parkinson's".

How different does that make me from anybody else? Who isn't pushing their rock up a hill? Who Lives more than a phone call away from tragedy? Who doesn't depend on the fine calculation of other drivers on the road to keep a trip to the grocery store from becoming a trip to the emergency room? Who doesn't carry some rogue cell, a bit of themselves that will rebel and fester until it overwhelms the life it is a part of?

Herman Melville wrote of the whalers in a harpoon party at sea. Fragile men in a fragile boat, rowing toward a Sperm Whale to kill it with a small spear of iron and wood attached to a rope. The rope threaded throughout the boat and when a whale was struck the line jerked alive with deadly speed. The rope could snatch away a life or a limb on board the boat with impersonal lethality. Melville knew that we all are surrounded by such ropes and thought that a whaler was at least fortunate enough to see them.

Most of us are at least dimly aware of these ropes. Much of what we do every day is spent at some level trying to elude or escape them. To see the rope is to fear it less, to know where not to step, to keep a hand clear. What is truly frightening is what you do not know: Where the whale is, what it will do next. Facing this is the bravery required of each of us, and it is the price of a good life. This price is the same whether you are diagnosed or not. Diagnosis is merely to be shown one of the ropes.

Bryn Williams' address to the World Parkinson's Congress

2010-12-07T15:23:00.000-08:00

Bryn Williams maks the case for urgenccy at the recent World Parkinson's Congress in Glasgow. You can visit his terrific web site for more from this passionate and optimistic man.

Southcentral Alaska Parkinson's Forecast for December

2010-12-07T10:52:00.000-08:00

Peter D-S here with the Parkinson's forecast for December. Looks like we can expect mild to moderate Parkinson's activities for the dark month of December. Heaviest activity expected, next week with a Telehealth presentation of the Tremble Cleffs (REALLY!) singing holiday songs and an account of experiences at the second World Parkinson's conference in Glasgow. Look for this event at Providence Hospital room 2401 Dec. 13 at 1:00. The following Saturday, the 18th of December3:30 at the Pioneer Home, we will have our annual Holiday potluck. Pam and I will bring something main dish-like, everybody else bring something tasty of your choosing.

Looking into January, we will have a special presentation from my buddy Jim Kerr, who will give us tips on balancing. Jim teaches juggling (among other things,) and balance is a fundamental.

Flash Molasses #17

2010-11-23T16:00:00.000-08:00

Video: Pete more or less alive at the 2010 Hope Conference

2010-11-14T22:14:00.000-08:00

Here is video of the speech I gave Nov 6 at the 2010 Hope Conference. The talk is about 30 min. Unfortunately the camera doesn't stray from me once, and the visuals that I incorporated into the talk will have to be imagined by you, the viewer. I will drop them into the text of the presentation that appears in preceding post to this one so that you may read it and experience them roughly as they occurred in the speech.

Homemade Hope: Living Well Now with Parkinson's Disease

2010-11-03T08:46:00.000-07:00

Here is my talk given to the 2010 Hope Conference in Seattle. This version is slightly adapted for print.

Home-made Hope: How to thrive now with Parkinson’s Disease

Eight years ago when I was diagnosed, I was told a couple of hopeful things. The first was that it was a good time to have Parkinson’s Disease. The second was that within 10 years we would have a cure. I still believe the first. But I do not wait any longer for the grand announcement that the cure is here. Have I given up hope? Not at all. But time is too short and too precious to wait for a cure. A cure that I now believe will arrive like our disease, slowly, stealthily, and incrementally.

I can’t let my quality of life depend on a chance that down the road someone somewhere will find my salvation in the bottom of a test tube. That will come some day, and we shouldn’t quit trying to make it happen. But that is something that I have little influence on. So I make hope myself.

What is hope? There are a surprising number of viewpoints. Take Emily Dickinson:

Hope is the thing with feathers? That’s a little weird, but it is poetic!
And now, here with an differing view, German Philosopher Friedrich Nietzsche:

Hmmmm, probably more appropriate for the “No Hope” conference.

How about this, from former Czech President and playwright, Vaclav Havel:

”Hope... is...an ability to work for something because it is good, not just because it stands a chance to succeed”

.

For Havel, hope isn’t just a mental state, it’s a capacity for action, intertwined with doing. Hope isn't just something you have, it's something you do. This is the area I want to explore.

Here is what I know about hope. Hope is what gets us out of bed in the morning. Without it, why would you bother? We need hope for a good quality of life every day when we get up, not in 10 years or 2 years or two months. Smart and resourceful and dedicated as they are this is not something the people in lab coats can do for us. When it comes to hope and Parkinson’s Disease, It’s up to each of us to make our own.

So how to go about that?

We can start with the idea that Parkinson’s Disease is transformative, Let's take a trip back in time to that glowing red-letter day when you got your diagnosis. Remember what it felt like?

Diagnosis is devastating to the person getting the verdict. Obviously, from that moment forward life is going to be different. Again. Parkinson's is transformative. But here’s the key: the transformation depends on more than the course of a mere disease. A big question is how will you handle it? Put aside the proximity or distance of a cure and the unfairness of it all. There is hope for you that you alone can create.

I was 43 when diagnosed. I wanted life to stay the same. I wanted to go on in my rare and wonderful cartooning career. I wanted to enjoy all the physical pleasures that I had come to think of as a right. More than that, I wanted to continue to be the husband and father I worked every day to be for my wife and son.

At the time, that seemed impossible. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Not that people don't try. Following my diagnosis, I was visited by a friend who predicted a difficult journey ahead that would be at least partially redeemed by what I learned along the way. I appreciated these words of comfort as a well-meaning emotional placebo. A sugar pill offered to fend off painful reality.

But my friend was far more right than I could have guessed. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're open to new paths to meaning, you'll be surprised at what you can salvage of life. And at what you can build. Like hope.

Over eight years experience, I found list of ingredients for home-made hope. Here are some that are critical. As Havel suggested, these are all activities, because hope is a verb.

Ingredient #1 Learn to adapt

You don't have the option to not change, you do have the option to adapt. And in adapting, you can open up new worlds. (By the way, that’s the kind of statement that sounded like B.S. before it applied to my life. But I have experienced it, and I know different now.)

The first area of my life PD tried to take charge of was my job as editorial cartoonist for the Anchorage Daily News. I began to feel the pain of repetitive strains that were compounded by the stiffness of Parkinson's. The struggle to continue drawing went on for years until finally, my bright and resourceful doctor of Physical Medicine told me he was out of ideas to keep me cartooning.

This was a double blow, first because drawing has been a large part of my self identity since I was eight. And second, it was my living. I wasn't ready to give it up to Parkinson's Disease. Fortunately, I knew something he didn’t.

I knew that there were electronic drawing pads that would enable me to approximate the correct posture of a typist while I was drawing. Using the pad, I could mimic that correct ergonomic practice, as opposed to my usual drawing posture.

When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that it would work. And so far, it does.

And here is where my effort to cope led me to a new world of artistic possibility, although the forward leap began with a few steps back. Once I jumped from pen and ink to the computer, I set about trying to recreate my old look with the electronic pad and stylus.

Mastering Photoshop, the program that I use to draw on the screen was the first step. And that first step was a lulu. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.

Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out. Eventually I arrived at my goal of being able to produce work on the computer that was indistinguishable from my pre-computer cartoons.

When I arrived at that lofty peak, that desperately sought grail, that ultimate moment dearly bought with toil and frustration, that apex of mastery when I finally was able to reproduce my old style, I was rewarded with a moment of clarity. It hit me that...

It hit me that recreating my old look was a stupid idea.

Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree? That's when I decided it was time I joined the 21st Century.

Since then I have been on a full-scale creative bender, exploiting the graphic vocabulary the computer makes possible.To make along story short, I went from simple black and white cartoons which I had done for decades, to animated videos with full color sound and action.

In adapting to PD's attempt to hem me in, I was forced to remake myself artistically. Doing that stimulated a period of creativity that was as unanticipated as it was exhilarating.

Ingredient 2 EXERCISE
I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to progression of a creeping paralysis of voluntary movement. I faced loss of the ability to walk, to speak, to draw. A disease treated with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told to expect.

The last thing I expected was the Spandex Angel. As I walked out of my doctor's office following my preliminary diagnosis, I had an eerie experience, almost a vision that I have come to think of as the visitation of the Spandex angel. The angel appeared before me, resplendent in garments of finest Spandex, vibrant with hues of a brightness not found in nature. The angel was both buff and ripped. Lo, its abs were like unto six packs, and its buns were of steel. And I was sore afraid. And stress did cause my Parkinson's symptoms to wax, and I did tremor with a vengeance. And the angel spake unto me with a great urgency, saying "Fear not, for though thou walk in the valley of PD, thou art not entirely helpless. Indeed thou hast a choice: Sit like unto a lump, inert and pathetic, and let this disease carry you down in an ever steepening spiral, or fight back against your insidious foe with exercise. This is thy choice: Move it or lose it!" Thus spake the Spandex Angel.

As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts. Rather than rehash his talk, let me just say exercise is a proven mood elevator. That's significant for those of us who have PD, which is accompanied by depression in roughly half the population that has Parkinson‘s. And exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. Finally I’d like to steal a point from something Dr. David Greely said during a recent telehealth presentation. It was a point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network, because you will send the message that you are trying. It doesn't have to be dramatic. Start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.

But take it from me, or take it from Dr. Alberts, or take it from Mississippi Fred MacDowell, "YOU GOT TO MOVE!"

Ingredient #3 Beware the Ogre who says “No!”

Some say there is a “Parkinson’s personality” and one of the traits of this personality is inflexibility, a reluctance to try new things or vary routines. I found myself playing this role with such dogged predictability that I even came up with a name for this unwelcome alter-ego I called myself The Ogre Who Says “No” Who was this Ogre? He was the one who could be counted on to find an excuse to not do anything out of the routine. He had a million objections, many of them, seductively reasonable- we needed to save money, or we didn’t have time, or we needed to simplify. But this was just a cover-up for his true agenda: a walk down the path of least resistance to hastened decay.

The Ogre is a serial buzz killer. It’s important to find ways to say “Yes” for your sake and for the sake of those who care for you. Don’t let Parkinson’s Disease trick you into becoming your own jailer. I am constantly surprised to discover that I can do more than I think I can.

Ingredient #4 Put pride in its place

Yes, pride is important, but it is a two-edged sword. It can keep us functioning when we seem to have no other resources. But it can cut us off from help. Pride can especially become a stumbling block for men in dealing with depression. We men don’t like to admit that we are not in control of our emotions and will try to tough it out. To tell the truth when depression was stalking me I even got a cheap thrill out of it. I had the sense that I was capable of great depth of feeling ordinary people couldn’t know. I was a great tormented soul like some Beethoven of Parkinson’s Disease. Why I thought this was a good idea escapes me now. Clearly was time to get a grip, talk to the doc and get some help. The goal is to tame the Parkinson’s beast. Rather than taking pride in your toughness, take pride in coping as successfully as you can.

Ingredient #5 Inform Yourself

Every fact that you can master about this disease is another tool that you can use to cope. And like the rest of your body, your brain needs exercise. Why not give it a great big dose of the exercise it needs by gathering and mastering facts about Parkinson’s? Intellectual challenge is one way to help keep your brain functioning as well as it can. And let me put in a word for the value of learning for its own sake. One of the pleasures of my post- diagnosis life has been exploring the mystery and wonder of the brain. It’s a complex and fascinating part of ourselves that is seeing exciting new inquiries and insights.

Ingredient #6 Get involved with your local support group.

Everyone hungers for information after diagnosis. A thousand urgent questions crowd forward in a tumult that demands answers. If you’re looking for experts on coping with Parkinson’s Disease, someone with not only the time to help you, but the hard-earned experience with dealing with this beast day-to-day, year to year, participate in a support group. Each member is an authority on PD, through years of intimate contact. Or do you just need a sympathetic ear? A support group is your ticket there, too. And don’t overlook what for me was a significant unexpected benefit: Seeing people who cope with unimaginable tenacity and grace with what had seemed to me the impossible. People who had been doing this impossible task for years and years.

Also remember that you are one of the experts, you have knowledge that can help someone else. I avoided my support group for a long time, afraid of meeting the person I call THE SCARY OLD GUY WITH PARKINSON’S (SOGWP) This wasn’t a particular person, it was my idea of my future personified in anyone with symptoms of advanced Parkinson’s Disease. Bent, shaky and drooling.

Eventually a support group meeting came up that was so compelling, I went in spite of my fear. It was crowded, and I ended up with nowhere to sit but right next to a full-blown SOGWP The guy I had been avoiding did not avoid me. To my excruciating discomfort He leaned over and said something unintelligible in a soft voice. I said “Pardon?” He leaned over again, and repeated himself, just as unintelligibly as the first time. I asked him again to repeat himself. This went on until his wife kindly intervened, telling me “He said don’t wait to get speech therapy”.

I didn’t.

Even as far along as he was, he still made the effort to help someone else. Sharing your strength can give you an amazing boost that a friend calls a “Helper’s High”. This is not mere goody-two-shoes theory. I have tested it myself and am surprised at how well it works

Ingredient #7 Care for your caregiver

If you are lucky enough to have someone who will stay by you in the face of all that may come, then you are lucky beyond all measure. Take care of that person. You are a big job, and you are worth it. But from time to time your partner will need a break. Understand this and make it easy for them. And anything you can do to help around the house will be deeply appreciated, especially by someone aware of what you must work through to get something done.

Ingredient #8 keep your sense of humor

This is what your sense of humor is for. It’s for coping with pain, for keeping things in scale. PD tries to take so many things from us, don’t let it take laughter too. There's nothing funny about someone with no problems. Unless you mean "funny strange". But Parkinson's? Parkinson’s is a side-splitting, non-stop laugh-riot! The slapstick alone around my house is at least Three Stooges quality, and I’m aiming now for Buster Keaton. And did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?

Ingredient #9 Hang on, help is on the way!

Nobody has all the answers, and everybody has their own particular type of PD. But I’ll bet that most of what works for me will work for you. That I work at all is testament to the dedication of those people with Parkinson’s, caregivers, doctors and researchers that have been at this since long before my first tremor appeared.

The techniques medications and surgery that help keep me going are the fruits of the labor of many smart, persistent amazingly skilled people who for some reason have focused their lives on making our lives better. Bit by bit they are cracking the Parkinson’s code. The day will surely come when people no longer suffer the pain and indignity of this cruel and cunning disorder. With all that they have already done for us, combined with what we can do for ourselves and others, we have every reason to believe daily in waking to better tomorrows, every reason to hope.

Pete's Parkinson's portraits: Margaret Bourke-White

2010-10-21T14:02:00.000-07:00

Margaret Bourke-White was a photographer who had an eye for images that would become iconic. Her Depression-era photos are eloquent in their simple black and white portrayal of a tough and quietly suffering people. She went on to make powerful photographs during world War II. As the war wound down in Europe she documented the horror of the concentration camps. The atrocity must have struck at her with particular force, as her father was Jewish.

Her career was a combination of art and high adventure. The website Gallery M (Where you can see some of her photographs) reports

During her unique career, Bourke-White was torpedoed in the Mediterranean, strafed by the Luftwaffe, stranded on an Arctic island, bombarded in Moscow, and pulled out of the Chesapeake when her chopper crashed. She was the first Western photographer to document Soviet industry after the revolution, to create a travelogue of Czechoslovakia and other Balkan states just before Hitler moved in to ignite World War II, and to be stationed in Moscow just before Germany bombed its former ally.

She died at 67 years of age from Parkinson's complications. A person of unusual toughness, she lived with the disease from 1956 through 1971, benefiting from then-experimental surgery. She left behind a remarkable collection of fine photographs as well as an example of courage and tenacity that sets a great model for all of us, not just those who have Parkinson's Disease.

Hoof and Mouth: Scientists Find Talking While Walking Can Lead to Falls for People With Parkinson's Disease

2010-09-27T13:14:00.000-07:00

Well it looks like mum's the word for PD patients who are in the act of walking. According to scientists at Florida State University those of us of the Parkie persuasion are increasing our risk of falls if we jaw while jogging. No word if screaming while you fall also amounts to the kind of multi-tasking we should avoid. But if you ask me, I say, scream. What have you got to lose?

On considering this latest bit of information it hit me that there are vast implications in the Things for Parkinsonians to Avoid Doing Department. Just to be helpful, I have compiled a handy list of additional potentially hazardous forms of multi-tasking for we Parkies to avoid. NB: many of these have yet to be studied by researchers, but I am rushing to publication with them anyway. NB2: This is NOT an exhaustive list, and you should not conclude that just because it's not listed that a particular form of multi-tasking is in any way safe or endorsed by this blog. When in doubt, assume the fetal position and refuse to move. Wait, that would be multi-tasking. When in doubt, just assume the fetal position. Call me sloppy, but for heaven's sake, not while you are walking.

List of Multi-Tasking No-Nos

Rubbing BBQ sauce in your hair while sticking your head in the mouth of a lion or other large predator

Yelling "FIRE" while in a crowded theater (unless, of course, the theater is on fire)

Greeting your friend John with a hearty "Hi, Jack!" while standing in a TSA line

Petting a porcupine while chewing gum

Tugging on Superman's cape while spitting into the wind

Pulling the mask off that old Lone Ranger while messing around with Jim

Drinking and unicycling

Operating heavy machinery while sleeping

Murmuring your girlfriend's name while making love to your spouse

Murmuring your spouse's name while making love to your girlfriend

Kicking sand in the face of a bully while being a 98-pound weakling

Yelling "FREE BIRD!!!" while attending the symphony

Acting as your own attorney while having a fool for a client

Repeating "Hide me, The monkeys are in the control booth!" while undergoing a psychiatric evaluation.

French-kissing an ostrich while either sober or inebriated (either of you)

Laughing maniacally during confession

As I mentioned above, this is not an exhaustive list. If you notice any egregious omissions, please post a reply with your multitasking no-no. If you have a complaint, just give me a call when you're out walking.

October in Parkinson's: What's Brewing

2010-09-23T08:01:00.000-07:00

The daylight hours are growing shorter. Ok, you didn't need me to tell you that. But maybe you'll prick up your ears at this: The Northwest Parkinson's Foundation will favor us with another interactive Telehealth presentation that may be viewed live in room 2401 at Providence Hospital's new cancer wing. The date will be October 11th, the time 1:00pm. The topic will be Addictions, Compulsions and Prioritization with Parkinson's. For more info, call 1-877-980-7500. For a wrap-up of the last Telehealth confererence, look here.

For our October 16th meeting, I plan to give a sneak preview of the speech I have been invited to give at the Hope Conference in Seattle this November. I was asked to provide a patient's point of view and I came up with a multi-media presentation called "Homemade Hope". I'll be looking for your feedback to make this as successful a presentation as possible. Again, the date is October 16, 3:30 in the afternoon at the Pioneer home.

Thanks,

Peter

Teleheath Conference: That's Entertainment!

2010-09-14T09:07:00.000-07:00

A band of die-hard Parkinson's information fanatics were treated to a display of fact-packed, well-thought out answers to questions from around the Northwest fielded by Spokane doctor David Greely. The Q&A was the centerpiece at yesterday's telehealth symposium. The symposium is a monthly interactive broadcast hosted in Anchorage by Providence Hospital. The supporting cast, in the form of small gatherings of attendees from Moses Lake to far-flung Anchorage asked thoughtful questions, and provided a certain amount of sympathetic comic relief as we watched one another struggle with technology using our PD-impaired bodies. (Extra points for the drama provided by the solitary elderly lady who spent several minutes under the table on camera out there somewhere. It was a relief to all of us when you reappeared in your seat and returned to noisily scratching your pencil on what I sure hope was paper.)

While a few questions may have vanished into the haze of the technological Bermuda Triangle, some significant points emerged that were well worth the time and effort of attending. Among the most compelling for me:

Muscle Cramps: can be treated by proper hydration, metabolic balance and addressing sleep problems, Which is, duh, the way you would treat them in a patient without PD. Sometimes we're not so special.

Eating and Pills: According to Dr. Greely, nine out of ten people with Parkinson's do not find any difficulty with this. For those that do, he still recommends taking your meds with a small bit of cracker or other non-meat to cue your digestive process to go into action. A pill is not usually enough in itself (unless you are taking some mighty big pills, Chester) to prompt the stomach to empty and push your medicine down the line to your intestines where it can be absorbed into your blood.

Stem Cells: Two thoughts here, relief from this direction is years down the road if it is to come at all, and the problem in the technology is not installing the cells, it's regulating them so that they produce the proper amount of dopamine in the brain. Dr. Greely likened it to the famous "Sorcerer's Apprentice" scene from the Disney Movie Fantasia. First you have one broom, then two, then four, then eight, then chaos.

Exercise I see you rolling your eyes out there. At least that's one part of you that's moving. I know that I harp on this subject ad nauseum. But Dr. Greely made a new point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network of care, because you will send the message that you are trying. It doesn't have to be dramatic, start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.

As if you were not already busy enough...

2010-09-13T12:23:00.000-07:00

OK Parkie Pals, limber up those fingers to mark the following dates on your calendars: TODAY the 13th, 1:00 Telehealth Seminar interactive info session on PD at Providence hospital second floor of the new cancer wing.

Sept 18,Saturday at our regular meeting at the Pioneer Home at 3:30 we will have a presentation on Deep Brain Stimulation (DBS) for Parkinson's Disease from Swedish Hospital in Seattle. Peggy Short, Advanced Nurse Practitioner and DBS programmer will be our main guest. This meeting will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator. Unfortunately Dr. Ron Young, a DBS surgeon had to cancel his participation.

Remember our DBS motto, "You need PD like you need a hole in your head." I'll see you there.

Oh, one more thing, I festinated across an excellent blog for those of you who have the exalted, or exhausted, status of PD caregiver. The blog is "Slow and Easy" you can find it here

Must run now, or at least shuffle,

Peter

The Parkinson's Parade

2010-09-09T21:44:00.000-07:00

Congratulations! You’ve got Parkinson’s Disease! Yes! You’ve hit the disease jackpot! The bells are ringing, the lights are flashing the crowd is hysterical because Parkinson’s is no mere disease, it’s a whole cream-center assortment of ailments packed into one! It’s a disease-a-ganza, a smorgasdisorder, a never-ending buffet of indignities, inconveniences and setbacks large and small.

Parkinson’s is no simple sickness. Instead it is a malady made up of a host of disorders that normally would be considered diseases themselves. But in Parkinson’s, they are mere symptoms, a part of the larger picture.

What do I mean by a “host” of disorders? I'll just run through a number of them off the top of my head. For starters, you look as though you are taking this stoically and with an Olympian calm. But that’s because you have lost the ability to use your facial muscles to express your inner feelings.

The inability to use your facial muscles this way, when it occurs on its own, can be a disease called “Moebius Syndrome”. It is rare, but it is no less a disease for that. One effect of this disorder is to cause its victims to lose their ability to express emotions subtle or dramatic. To have a frozen face is to present an eerily blank slate to the world. A world that often concludes that you are unreadable because you are up to no good, and treats you accordingly.

That should be plenty for any disease, but Parkinson’s is an overachiever. Parkinson's is just getting started!

So to frozen face, let’s add dystonia. Dystonia is the involuntary flexing or cramping of a muscle. Not only can this be painful, it can result in a person a enduring twisted hands or other body parts held at bizarre angles. Nasty enough, but only one marcher in the PD Parade.

Marching right behind dystonia, we have depression. Like PD, Depression can exhibit itself in many ways: the blues, lethargy, and slowness of movement are some. And on they come, Parkinson's sufferers are hosts to many more combinations of what could stand on their own as full-blown diseases. There's urgent bladder, tremor, cognitive impairment, sexual dysfunction, even loss of the sense of smell.

There is some good news here. Many of these problems can be alleviated for many years with proper medication and careful management of exercise and diet, But this industrious disease refuses to quit there! On top of all the first level effects, there exists a second tier of disease-like complications that set in over time from the medications. For instance?

Well, how about dyskinesia? That's the dance-like uncontrolled movements made as the brain becomes less able to handle the levels of medication in your system. Suddenly, you're moving too much instead of not at all. This does have its benefit on the exercise front. I lost at least ten pounds while undergoing endless bouts of unwanted movement. But it complicates anything requiring an accurate hand abominably, and you move in a spastic ballet that looks like Joe Cocker dancing Martha Graham.

But PD isn't all physical torture. Drug side effects can also involve mental disturbance. Because PD medication is involved with dopamine, which regulates feelings of reward as well as movement, the introduction of dopamine-like drugs can lead to compulsive addictions to things like gambling or sex.

Many, but not all these disorders can be held at bay with brain surgery. That's the good news. The bad? Many of these disorders can be held at bay, but it takes brain surgery.

This is by no means an exhaustive list, though it is an exhausting one. Oh, which reminds me, one more Parkinson's complication that is a disease in itself. Narcolepsy- the sudden dropping off into deep sleep, a surprise nap attack that strikes all at once without warning. But then again, with all those diseases on board, is it any wonder a person needs a little shut-eye?

How Would You Like Your Deadly Lizard Venom?

2010-08-26T18:12:00.000-07:00

Here's an approach that hasn't yet been tried for Parkinson's disease. And no wonder. Are you ready to warm up to trusting the healing powers of the Gila Monster? Scientists in Britain are developing a treatment for Parkinson's disease that incorporates Gila venom (or a sythetic substitute). They say the stuff works, stopping the cell loss characteristic of the Parkinsonian brain, and even improving symptoms. They cited success in 5 different rodent models of the disease. So once again, exciting news for rats.

For humans, further developments will depend on the results of a small trial being organized in Britain. One hopeful note is that this drug is already in use for diabetics, which means it can at least be used safely in treating humans.

And think of the boasting potential! "I'm a rip-snortin' Parkie with venom in mah veins! The juice of the deadly Gila Monster is mother's milk to me!"

You can have the first taste. No, really, I insist...

Build Your Parkinson's Word Power, part 4

2010-08-22T15:01:00.000-07:00

OK folks, time to dive once again into the wonderful world of Parkinson's vocabulary. (Previous posts on Parkinson's vocabulary here, here, and here) And isn't it like Parkinson's to sabotage your ability to speak at the same time it hands you a handful of shiny and slippery new words to master? Where to begin? Well, here is a confusing term "Parkinson's Disease Support Group" What's confusing about that? I hear you asking. It's plainly a group that comes together to further the cause of Parkinson's Disease, work to spread it and try to perpetuate it at home and abroad. In short, to support Parkinson's Disease, just like it says.

Well, what's confusing here is that is just the opposite of what these groups do. They actually exist to help those afflicted with Parkinson's to cope with their ailment and many raise money and work in other ways to end this scourge forever. So check out your local support group, and while you are there, see if you can get them to change the name to something more accurate, like Parkinson's Disease Patient Support Group. It will probably help immensely with membership.

Here's a word you don't see everyday, though as a person with Parkinson's Disease you probably experience it all the time: Hyposmia- the reduction of your sense of smell. Hyposmia? Well "Hypo" translates roughly as "not enough of" like in "hypothermia". So "osmia" must mean "smell" or "stench". Hold on while I check that out... and darned if "osmia" isn't Greek for "Smell". As it turns out "Hyposmia" is related to the word "Anosmia" the loss of your entire sense of smell. Again we can break anosmia down to its parts to get the meaning- "A"(which means "without") + "Nosmia" which is obviously (OK, I'm guessing here) Greek for "nose". Which gives us "Without a nose" or to have no sense of smell!

Another fabulous PD term is "cogwheeling". It applies to the lack of smoothness of motion in our joints, almost as though they had cog mechanisms instead of the standard-issue flesh and bone. While we're on the subject of mechanistic metaphors for Parkinson's, allow me to introduce you to a fine coinage my wife came up with: "Pinballing". This is a term she uses to describe my overmedicated, underbalanced locomotion through space, bouncing off this, running into that and generally threatening havoc wherever I lurch. He slams into a table!DING! DING! DING! 500 points! Sets a chair to spinning! (Light strobes) 650 points! bounces off the wall! BUZZ! 250 points per contact! And it looks folks, like... YES! ...Congratulations! an all-time high score! What do you win? Lucky YOU! You win another turn.

Incomi...er, make that Upcoming Anchorage Parkinson's Events

2010-08-14T10:09:00.000-07:00

Hello friends, Here's what's coming up in the Anchorage Parkinson's world. August meeting will be held the 21st, Saturday at 3;30in the Anchorage Pioneer home. Betty Berry would be glad to lead a concurrent meeting for caregivers, She asks those interested to please email her at (bberry2205@gci.net). She also writes

"I received a notice in the mail regarding a Senior Housing Fair sponsored by Providence to be held at the Senior Center Thursday, August 19.

Learn about housing options available in Anchorage and Mat-Su for seniors in the areas of : Independent housing - Assisted living - Skilled nursing care and more -(so states the notice.)

Thought this might be of interest to those in the Parkinson Support Group.
Our upcoming meeting will be open phones, sharing tips and experiences."

For the September meeting we will have a group from Swedish Hospital in Seattle including Peggy Short, Advanced Nurse Practitioner and DBS programmer, and Dr Ron Young, a neurosurgeon with nearly 30 years of DBS experience, who is now practicing at Swedish, This meeting will be held the 18th and will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator.

If you have a topic you would like to explore at a future meeting please email me

dunlapshohl@gmail.com

A final note, Yoga Instructor Karen Greenwood will soon be offering a Yoga class for the movement impaired through her Anchorage Studio. We will offer to pay class fees for members of the Anchorage Parkison's Support Group. Yoga is recommended for flexibility, strength and balance. Any of you who feel like you are better than average in these important areas, raise your hand. No hands up? Great, I'll see you all there! More details to come.

Pete

Home-made hope: Pete to speak at Hope Conference in Seattle this November

2010-07-20T04:45:00.000-07:00

Excitement! Suspense! Harrowing adventure!...That's what's in it for me. What's in it for you when I speak at the Hope Conference in Seattle? I plan to look at the idea of "Home-made hope, lessons learned in spite of myself in rebuilding your life after diagnosis". The Hope Conference is an event for people with Parkinson's Disease, their families and care givers. Here is a summary from the American Parkison's Disease Association Seattle Chapter

Saturday, November 6, 2010

Seattle Airport Hilton Convention Center
17620 International Blvd
Seattle WA 98188

The American Parkinson Disease Association,Washington Chapter, and the Northwest Parkinson's Foundation are co-hosting the region's largest educational symposium for patients, family, friends, and caregivers.

Guest Speakers:
Dr. Jay Alberts, Biomedical Engineer Assistant Professor at Cleveland Clinic, Lerner Research Institute
"Is Exercise Medicine for Parkinson's Disease?"
Dr. James Leverenz, Associate Professor, Depts. Neurology and Psychiatry, University of Washington
"Research Update: Biomarkers and PD"
Dr. Monique Giroux, Movement Disorder Specialist, Medical Director of the Northwest Parkinson's Foundation
Wellness Center
"Wellness Choices for Brain Health"
Peter Dunlap-Shohl
"Homemade Hope, How to Thrive Today with PD"
Matt Ford, PT, MA, PhD, University of Alabama at Birmingham
"Music is Exercise for the Parkinson's Brain"

What dreams may come

2010-07-08T04:18:00.000-07:00

So it's time to turn in after another day of tremors, dyskinesia and muscle stiffness. As a hard workin', hardly workin' Parkie, you're ready for a well-deserved three or four hours of sleep before your nightly high-stakes race to the toilet. Well not so (pardon the expression) fast, bradykinesia boy. It would be un-parkinson's to expect any part of life to be unmolested by this all-pervasive and all-perverse malady.

It seems that although we people of the Parkinson's persuasion do not have the liberty to move freely during the day, our addled nervous systems grant us the unusual ability to physically act out our dreams. Why is this an unusual ability? Well, humdrum, everyday, normal people have a mechanism that restricts motion while they sleep. This keeps them from damaging themselves, or others, while acting out their dreams.

In still another of the ironies of Parkinson's Disease, a person who has Parkinson's may paradoxically act out their dreams. Which, as you may have guessed I did this morning.

Let's join my nightmare just as I am about to deliver a desperate blow to a lethal
and deranged cab driver. It's the one chance anyone has to stop this madman. Riding a surge of adrenalin I swing hard for his head and wake on the jolt of the abrupt connection of bone to bone, suddenly jerked alert by the pain in my hand as it slams into my cell phone that a second ago had peacefully rested on a box next to my bed. The phone flies off the box and skips across the floor into the kitchen, seemingly anxious to put as much distance as possible between itself and the unpredictable violent lunatic in the bed.

You always hurt the ones you love.

Local Man Finally Dies of Parkinson's Complications

2010-07-01T09:58:00.000-07:00

Note: At a recent APDA-sponsored Parkinson's Disease seminar a speaker suggested that one way of coping with bad news is to realize that there are people who have it worse than you. Fair enough, but somewhere in this weary world there must be the ultimate loser, that last guy whom everyone else is fortunate not to be. As a public service, Off & On has dug up this hapless schlemiel, one Herb Sleeper of Fargo, North Dakota. The following is his obituary as it appeared in the Fargo FreePressArgusChronical Weekly Shopper.

Relatives of Herbert (Herb, Bert) Sleeper are pleased to announce the passing of their late father/husband/brother/cousin/uncle. Members of the family were universal in their sense that "A great weight has been lifted from our shoulders" as his brother Harold (Heavy) Sleeper was eager to tell this reporter. "For starters, he lived in Fargo" his brother continued "If you could call that living". Harold fondly recalled how when they were young they would roam the wide plains at will, getting bitten by ticks, stung by bees and assaulted by motorcycle gangs. "All God's creation seemed to be against us in those days" he said, his eyebrows dancing as he recalled how his brother had been struck 12 times by lightning."Not uncommon for those of us living in 'The lightning strike state' but a bit unusual for just one day" he said with a pimpish grin.

"Maybe it was the lightning that caused his Parkinson's" his wife Shelly said, "Or maybe it was the pesticides that he routinely drank after hearing a friend complain of a stomach bug. Whatever. Of Herb it can be truly said that he took his early-onset diagnosis lying down" She remembered with clear distaste how Herb would complain about his symptoms in a voice that grew softer and softer by the month. He wanted speech therapy", she laughed as she recalled, "But we were all against it".

Still she was unable to disguise a note of admiration as she looked back at Herb's fierce struggle to not do anything about his deteriorating condition. "He'd blow off taking his pills, missed Doctor appointments, and hey, forget exercise!" she smiled. "He said he'd die before he joined a support group which come to think of it, I guess he did. His one accomplished goal in life. His only goal now that I think of it. Pitiful".

Herb will be remembered as a great indoorsman, who liked nothing better than rising early to hunt for his remote. "He and that damn remote were inseparable" recalled his wife. "It was agony waiting for him to change channels what with his tremors and slowness. We used to watch infomercials for hours as he attempted to aim the thing at the TV. When there were no good infomercials on, he would lie endlessly on the couch moaning inarticulately to himself and any unfortunate soul who happened near. No matter how bad things got, Herb was willing to share the misery. He's better off now that he's dead. Hell we all are." No services will be held . In lieu of flowers the family asks that you simply send them money, unlike Herb, therapy ain't cheap.

On the Job Training for People with Parkinson's Disease

2010-06-20T12:36:00.000-07:00

Parkinson's is like having a job you never clock out of. It's a combination of clerk, (what pill am I on now? When do I need to order more?) researcher, (what can I learn about this new symptom, that proposed medication, this new technique, that new facility?) dietitian, pharmacist and any number of other specialties that crop up as you make your way on the PD journey. The hours are long, the pay is laughable, and don't get me started on the health plan.

Unfortunately, the reasonable response of "Sorry, I'm not qualified to have Parkinson's Disease" will not deter this ambitious disorder from selecting you for the position. This means that we have to grab every opportunity for learning. Here are highlights from several recent sessions of "on the job training" that I was able to take advantage of.

The first was a web conference for people who blog about Parkinson's Disease that offered us a chance to ask questions of an academic neurologist. The presentation was somewhat marred by the discussion of about PD basics that were familiar territory for those of us attending. The presentation only came alive for me at one point. The doctor was asked about falling and his reply was offered with a note of urgency that gave it impact. His answer was that once you start falling, there is not much that you can do to improve your balance. His advice? A newly diagnosed patient should take up Yoga or some other balancing discipline as soon as possible so as to be so, as he put it "overcompensated" in their balance skills that the disease will have much farther to go to erode this ability to the danger point. This was the first time I have ever heard of overcompensation used as strategy outside of Wall Street wage practices. If overcompensation is good enough for them, it's good enough for us!

Next up were a pair of presentations held in Wasilla, made possible by the Washington Chapter of the American Parkinson's Disease Association. A shout out to them, especially Evie, for going to the trouble of coming all this way and bringing such excellent speakers.

The first to talk was Doctor of Pharmacology Steve Setter. During a presentation enlivened by humor, Dr Setter left us with a number of excellent thoughts for managing medications. Among the tips:

Know your pharmacist The complexity of the Parkinson's family of disorders along with other problems you may have, for example abnormal blood pressure or heart problems means that you need someone on your team who is looking at what all your doctors are doing with all your medications. Where this is not possible, for instance when you must mail order your meds, it behooves you to study the reams of boring info in tiny type that comes with the pills. See "researcher" above.

Know the shape, color and size of your medications if something looks different, ask. Pharmacists do make mistakes sometimes.

With or without food? Efficacy of drugs and the ability to tolerate them are often pegged to this issue.

Always take pills with fluids make sure that pill goes where it can be readily absorbed instead of lodging in your throat.

Know the optimal timing of your doses here Dr. Setter offered an interesting tidbit: If you know that you are going to be stuck in a car or airplane and you don't want to be dyskinetic the whole time alter the timing of your dosage to allow for that.

Over the counter medications can have interactions with prescription medications. An example cited was Tylenol pm, which contains benedryl, this, when crossed with PD medications that make one sleepy can add up to an exaggerated snoozing effect.

Dr. Setter offered the National Parkinson's Foundation's drug handbook (Download it here) as an especially helpful resource.

One final point that Dr. Setter made was that we need to be careful about giving advice to other people with Parkinson's based on our experience. Because every case of PD is different, and because PD meds act differently in different people at different stages one person's experience may not be comparable to another person's.

Dr. Setter was followed by Dr. Kris Rhoades, a neuropsychologist practicing at Virginia Mason Hospital in Seattle. Dr Rhoades spoke on cognition, depression and sexual dysfunction in Parkinson's Disease. As usual this hard-working disease is doing its darndest to undermine us in multiple ways. In the area of cognition Parkinson's affects the frontal lobe of the brain, impairing what doctors call "executive function" and what you and I call multi-tasking, planning, speaking the ability to retrieve memories and the ability to adapt. With its habitual irony PD attacks the very areas we need to use in order to cope successfully with it.

So how do we work against this? Some Alzheimer's medications help, along with our old friend exercise and the practice of exposing oneself to new ideas and situations, fostering flexibility in our brains. Personally, trying to do all of the exercise and brain stimulating I can and hoping it takes a long time to catch up with me.

Dr. Rhoades then moved on to depression. We know it is common in Parkinson's disease, and that the lack of dopamine, which is one of the main feel-good chemicals in our brains is a major hallmark of Parkinson's Disease. So the nature of our disorder makes us easy targets for depression. Depression in Parkinson's is often characterized by slowness, impaired concentration, weight loss, sleep disruption, diminished appetite and decreased sexual desire. In my experience it is also marked particularly in men with denial. I asked Dr. Rhoades if he could suggest any strategies to break through to a depressed person and get them to deal with it. His Zen koan-like answer: "How many neuropsychologists does it take to change a light bulb? Only one, but the light bulb has to want to change".

On dealing with depression, Dr. Rhoades said that anti-depressants give us a window to deal with the problem, implying they are a temporary solution to the problem. Beyond advocating exercise, which my reading and personal experience confirm help quite a bit, I don't recall much that he offered to go beyond them. And if the depression is the result of some chemical imbalance triggered by our disease, why not continue to use them as more than a stop-gap?? Dr Rhoades, if you are reading this, I welcome comment.

From depression and dementia, it was on to sexual dysfunction. Dr. Rhoades took on some myths and barriers to understanding and coping with this problem. Among the myths: Older adults do not want sex, older adult sex will be dysfunctional, and that older adults cannot be treated for this problem. Not necessarily so, says Dr. Rhoades.

He went on to outline some special areas of difficulty for PD patients: Movement impairment, changed appearance, masked face, sleep disturbance, fatigue, and change in roles in the partnership involved. He also listed differences between the sexes when it comes to sex and PD. Men still become aroused, but then have erectile failure. Women are less easily aroused. Spot the PD irony here? Every muscle in your body becomes stiff except the one you want to become stiff. Parkinson's, you crazy jokester you!

What to do? Vow of celibacy, anyone? Me neither. That leaves us with the fall-backs we are all at least dimly aware of. For men, those pills which everybody is spamming you about constantly (talk to your doctor.) Oral estrogen, creams, lubricants and additional stimulation and foreplay for women. Above all Dr. Rhoades advocates talking with your partner. Communication you may have gone without in the past is now imperative. A good reason to consider speech therapy!

Dr. Rhoades asked that we recognize pragmatics, that we acknowledge emotional stress, consider demonstrating love in non-sexual ways and talk frankly and openly about sex with our partner.

That's all from this edition of on the job training here at Parkinson's University (P.U)
Let's conclude with the P.U. Anthem:

For Parkinson's we won't sit still,
Though long the climb and steep the hill
Until we've popped our final pill,
P.U. we'll keep learning.
Depressed and slow, dysfunctional too
Still we raise our glass to you
We'll kindle hope and rise anew.
And keep the home fires burning.

Is there a dry eye in the house?

Face Value

2010-06-09T13:57:00.000-07:00

A reader just passed on this fascinating New York Times story that deals with the tremendous amount of non-verbal communication that people transmit with subtle facial cues. Cues that we people with Parkinson's Disease are often unaware we no longer send. (You can find an earlier piece that I wrote on this subject here)

This is a valuable reminder that if we do not understand and somehow compensate for the meanings and nuances that we do not transmit because of our frozen faces, we are likely to encounter more than misunderstanding, we may be dismissed as dull, or perceived as angry. Which of course we may be, but who wants to start with that as the default setting for their face?

The article discusses several strategies that people use to get around the problem of the paralyzed face. Unfortunately some of these, such as the exquisitely pitched voice, or the well-tempered laugh, are difficult for those of us with Parkinson's to execute. It's important to be aware of this and work out compensating strategies. I've found it useful, even necessary at times to explain my poker face. People may assume that if you appear to be hiding your emotions, there is some deep and nefarious reason for it, and it puts them on their guard.

How important is a facial expression? So important that it can be read across species lines by our pets. Dogs are great students of humanity (cats don't give a rat's tail) and can learn to mimic a "social smile" I know this because my old dog, the legendary Sadie, learned to do it. We came home one day from work and, in addition to the customary leaping and tail-wagging, we were greeted by a slight curling of her lips. "We've got a grinner dog! Pam exclaimed, and from then on whenever she would start with one of her peculiar little grins we would smile back with all the wattage we could muster, until she mastered a wide grin that, if you didn't read the rest of her body language, bore an alarming semblance to a snarl.

How do I know that this was a "Social smile"? I saw her use it as one, just as a human would. This was years ago on a ski trip that took two days. On the morning of our second day we emerged from our chilly sleeping bags and set about cooking a hot breakfast. I don't remember exactly what we fixed, but to a cold and hungry dog it must have smelled of heaven.

My friend Peter loaded his plate up, then set it down to fetch something. Sadie crept quietly up from behind and was about to devour his breakfast when Peter turned around and caught her, unleashing a fusillade of angry words. Sadie retreated about ten feet, then turned around and gave him the biggest "Who me?" apology grin of her career. It was a brilliant deployment of a facial cue, and it worked, getting her off the hook.

A hook that impales me frequently now that I must concentrate and remember to smile. It's easier when I remember even a dog will do it.

It's June, Let's eat!

2010-05-30T18:00:00.000-07:00

Hello Friends, Can it be? I think it's... YES! Time for the annual picnic. We've had a year to recover since the last one, so the moment has arrived. Put your best feed forward, and step up to the plate. Once again Pam and I will grill some buffalo, you bring whatever you think you prepare well and enjoy eating- it's potluck roulette at the casino cafe!

Here is the essential information
Who: Anyone with an interest in Parkinson's Disease and an appetite
When: Saturday June 19th, 3:30 in the afternoon
Where: Pam and Pete's palatial Parkie Playground, 9601 Elmore Rd. That's just South of the intersection of Abbott and Elmore Rd.
Please alert us if you plan to come so that we have a rough idea of the amount of food we need.
Questions? Call 350-9691
We hope to see you there!

Pete

The Sound of the Man Working on the (Bicycle ) Chain Gang

2010-05-14T17:47:00.000-07:00

(Above, a picture of me sent by friend Scott McMurren. It was shot from his car when he happened across me aboard my recumbent. In his typical kindly way, he titled this "Riding Nerdy")

Although I am crazy about bicycling, my earliest memory of riding is not a good one. I was maybe six or seven and was just learning on my sister's hand-me-down royal blue Raleigh. Before me, the open road. Behind me, my mom, running as I pedaled, her hand gripping the saddle to steady me. Only... what's this? Applause? That's Mom clapping! That can only mean there is nothing holding me up! Exactly like Wile E. Coyote walking into thin air off a cliff, when I became aware that there was nothing holding me up I went down hard.

I've had numerous spectacular falls since then, including one that left my right cheek impaled by an old rusty aerial from a car radio, and another when I smacked into a woman who was sharing a joint with her boyfriend on the path down from West High hill. And now that I have Parkinson's Disease I expect to fall from my bike frequently.

Yet I don't.

Even more mysterious than the human ability to balance on two skinny tires while hurtling forward is doing this while your movement is compromised by Parkinson's Disease. Recently a small sensation was kicked up by a report that a Dutch man with advanced PD was barely able to walk but rode his bike six miles per day (you can see him tremoring up a storm, then riding his bike here)

This is a case where the patients are way ahead of parts of the medical community. I doubt this news shocked Davis Phinney or Doug Bahniuk, or any of a great number of parkies who pedal.

Like them, I feel freest and most like my old self when on a bike. But what I didn't expect was all that biking could restore.

Lately I have been struggling with my voice, partly because new settings on my deep brain stimulator seem to interfere with my brain's vocal centers. My speech can quickly deteriorate into rushed and indecipherable syllables. And my singing, to use a decipherable syllable: Oy!

So I was surprised when about 45 minutes into a 2 hour ride yesterday when I found myself singing in the saddle with better pitch and strength than I had been able to muster for months. I easily warbled "Pancho and Lefty", "The January Man", and host of other songs from my personal hit parade. When I launched into "Poisoning Pigeons in the Park" I envisioned a full-blown musical. In the show-stopping big production number the kids on a passing school bus joined in with four-part harmony on the chorus while a trio of street-corner inebriates doo-wopped and a bevy of meter maids high-kicked in between writing tickets. All this only slightly marred by gasps for air.

That exercise can at least temporarily improve PD symptoms is confirmed by exciting work done by Dr. Jay Alberts of the Cleveland clinic. But it's one thing to read about the amazing research results that Dr. Alberts is reporting, or even to see video. It's quite another to find yourself flying ahead on two skinny tires, singing your fool head off, and held up against all belief by an invisible hand.

Flash Molasses Episode 16

2010-05-13T22:22:00.001-07:00

Looking for a fight? Thinking differently about Parkinson's Disease

2010-05-06T09:38:00.000-07:00

Everyone wants to fight Parkinson's Disease. I've used that pitch myself. But I have come to wonder if "fight" is the word we want.

For one thing, thanks to good science and good care, people with Parkinson's can expect to live as long as those who haven't got it. If, like me, you are in your 50s that means perhaps three decades of fighting ahead. That is an exhausting prospect.

Furthermore, for all the strategy and discipline required of a fighter, in the end fighting is about force and really, how far is that going to take you? What's the plan? Punch Parkinson's in the nose? Good luck with that.

Parkinson's Disease is not a thing or a person. In fact in its most notable aspect it's the very absence of something, dopamine, that causes the symptoms which we are bound by. And even these symptoms are often described in terms of what is gone, what no longer exists, the ability to move freely, to smell, to balance.

To fight Parkinson's Disease is to fight phantoms. This is a terrible form of asymmetric warfare, because though you can't fight phantoms, they can conquer you.

In making our condition into a struggle with a tireless behemoth we run the risk of asking too much of ourselves, and too little. To cast the job of living with PD as a battle with this implacable and, let's face it, undefeated foe, is to set yourself up for failure. Why not look for other metaphors that might be more fruitful?

How might we think of it? We can approach our journey through Parkinson's Disease the same way Phillipe Petit approached his high wire walk between the towers of the World Trade Center. Petit's walk on the wire required discipline, intelligence, courage, and above all balance. (He also threw in a sizable measure of artistry, but I'm trying not to ask too much.)

Discipline is what we must have to deal with the rigors of living while adhering to the routines that our illness requires of us, the pills, the mindfulness in speech, the necessity of knowing when to say no, and just as important, when to say yes. Intelligence? Cultivate a thirst to know all you can about PD. Every fact is a tool to help you live better. Courage? Courage is a tough one. It helps to have others around you that must master the same terrain. That's what the support groups are for. Balance, in the sense of knowing your limits and yet pushing against them is something that we all need to practice. The sooner the better.

Can these skills enable you to live well with Parkinson's Disease? Much depends on you. But they did carry a man through the air high above the hard and busy streets of Manhattan not so long ago.

Flash Molasses Episode 15

2010-05-03T15:02:00.000-07:00

Flash Molasses, Episode 14

2010-04-25T22:05:00.001-07:00

What's coming up in the Alaska Parkinson's scene: A look into the near future (Update, topic for telehealth presentation changed)

2010-04-21T13:13:00.000-07:00

Here is the PD forecast for May and June.

May 10 Telehealth Session

There will be a Telehealth Presentation at Providence Hospital rm. 2401 at 1:00 p.m. May 10. The topic for this edition of these interactive sessions will be "Deep Brain Stimulation" You can find out more by calling 1-877-980-7500, and you can find out even more by actually going!

May 15 Support group meeting
On May 15th our regular meeting will be a visit with Bill Bell, co-founder and director of the Northwest Parkinson's Foundation. Bill will fill us in on what the Booth Gardner center in Seattle can do for people with Parkinson's and, as a veteran observer of the PD world, he will give us a view on the current state of that world, and where we are headed. Bill is a terrific guy, you don't want to miss this.

June 17th Wasilla seminar
On June 17th, the American Parkinson's Disease Association, Washington State Chapter will bring a Parkinson's Disease Patient Care Educational Program to Wasilla. The presentation will take place at Evangelos, 2530 East Parks Highway from 11:00-2:00 p.m. There will be two speakers. First we'll hear Dr. Steve Setter on "Your PD medications, 10 things you should know and do in 2010!" second, Dr. Kris Rhoads, a neuro-psychologist, will speak on "Neuropsychological changes in Parkinson's Disease: Cognition, Affect and Sexuality". This event is free and comes with lunch included. Registration is required, and can be done by phone at 425-443-8269, by email evedavis@gmail.com, or via the Website, once there, click on "Educational programs".

June 19th Support group picnic.
June 19t will be our annual picnic, more details to come.