Sunday, December 28, 2008

Why I'm looking forward to 2009: Good news for Alaskans with Parkinson's Disease

Hold me back!

It's all I can do to restrain myself from from typing the following news in all capital letters, followed by multiple exclamation points. Why am I so jazzed? Because it looks like we are getting very close to what I thought was an impossible dream. We hope to bring up a Parkinson's Disease specialist to see patients here in Anchorage on a quarterly basis.

His name is Dr. Alec Glass. Dr.Glass works as a Parkinson's specialist at University of California San Francisco, I will post a look at his training at the bottom of this update.

How close are we?
Here is an excerpt from an email he recently sent.

"I have submitted my application for an AK license which should be processed in early 2009—hopefully!... I am excited to kick this off and hope that we can improve PD care for patients up there."


This is a terrific opportunity for Alaskans to see a first-rate, well-trained and personable neurologist without the hassle and expense of traveling thousands of miles to find expert care. Which brings up the following concern: Dr. Glass will need enough patients to make this worth the effort and cost. This is where you come in. How do you make an appointment? Dr. Frank Ellenson is the local neurologist who will be hosting Dr. Glass. So, any of you who could benefit from this please arrange a visit through Dr. Ellenson's office. You will likely need a referral from your current provider.

A big thank-you to all involved in getting us to this point. I especially need to single out our visiting support group member Joanne Power, who got this ball rolling.

In conclusion,just let me add WOOOOO-HOOOOOOOO!!!!!!!!!!

Here is the contact info:

Alaska Neurology Center. 3851 Piper Street Suite T345. Anchorage AK 99508. 1-866-977-2562 Phone/Fax.
Alaska Neurology Center can be contacted through their web site.

Here is more information on Dr. Glass.

Current Position

September 2006- present Assistant Clinical Professor of Neurology


Education


1993-1997 Trinity University, San Antonio B.A. Cum Laude,Psychology

1997-2001 University of Texas, San Antonio M.D.

2001-2002 Tufts-SEMC, Boston Intern Internal Medicine

2002-2005 Tufts-NEMC, Boston Resident Neurology

2005-2006 Mayo Clinic, Rochester Fellow Movement Disorders

Certification & Licensure


2005. Medical Licensure, Minnesota
2006. Medical Licensure, California
2007. ABPN Board Certification, Neurology



Honors and Awards


2004 AAN travel award for outstanding resident teacher.

1997 Cum Laude with Departmental Honors

Scientific Society Roles and Memberships

Memberships:

2001-present American Medical Association

2001-present American Academy of Neurology

2005-present International Movement Disorders Society

2007-present American Academy of Sleep Medicine

Service to Professional Organizations:

2005-present Member, Ethics committee, American Academy of Neurology

Keywords/Areas of Interest:


Parkinson’s Disease, Movement Disorders, Dystonia, Botulinum Toxin, Tremor, Deep Brain Stimulation, Electrophysiology of Movement Disorders

Professional Activities


Clinical Care, Movement Disorders: I see patients with various movement disorders including Parkinson’s disease, dystonia, myoclonus, tremor and more unusual movement disorders 4 half-days per week. . Additionally I spend 3 half days per month in the Botulinum Toxin lab in which Botulinum therapy is administered for dystonia, spasticity, and sialorrhea. One day per week is spent seeing patients with various sleep disorders in the UCSF Sleep Disorders Clinic at Mount Zion. One day per month is spent in the clinical Movement Disorders electrophysiology laboratory in which surface and needle EMG are used in conjunction with various other modalities in the evaluation of various complex movement disorders (myoclunus, non-routine tremors) Finally, I assist in the care of patients treated surgically for Parkinson’s disease, dystonia and tremor.

Monday, December 22, 2008

Pete's People with Parkinson's Portraits No. 7, James Doohan



Yes, the man who played Scotty on Star Trek, James Doohan had PD, among other things. Apparently, Dr. McCoy's tricorder, while promising in early trials proved ineffective for treating Parkinson's Disease. The quest goes on.

Wednesday, December 10, 2008

Music to accompany Parkinson's Disease

(Dedicated to my brother Dave.)

Music can move us in many ways, emotional, physical and spiritual. Even though I am a hardcore skeptic, music moves me closer to God than any metaphysical "proof." The ineffable power of music is parallel to our conception of an all-powerful invisible God. Both are mysteries and both move us to joy, fear, awe and love.

When I hear praise sung by the Blind Boys of Alabama, or hear the anguish of separation from the divine lamented by William Byrd in "Bow Thine Ear Oh Lord" I'm closer to belief than the words of any preacher can bring me. Perhaps that's why some sects ban music. We can't have the choir director showing up the pastor.

Music also makes us shake our booties. Which is the more common reason that religions ban it. But the human urge to boogie to the beat is deep as a funkadelic bass part. And according to "Musicophilia" by neurologist Oliver Sacks, humans are the only creatures known to respond to rhythm by joining in with their own (often unconscious) toe-tapping time keeping. For us, it's as natural as breathing.

Symphonies are even written in "movements." And since movement is the heart of our concern as people with Parkinson's Disease, music is our ally. So here is an assortment of music that makes me move, one way or another. It's dopamine for the soul.

To warm up with something that will make a dead man stomp his feet, Cue up the "Yankee's Revenge" medley by David Bromberg, an ebullient breakneck journey through some well-known fiddle tunes. If Bromberg isn't your cup of tea, try Bothy Band's "Green Groves of Erin/Flowers of Red Hill medly. Then swing into "South Australia" by the Pogues. And as long as our Irish is up, detour over to "Gloria" by Van Morrison If that isn't reet pateet, I just don't know what is.

How do you follow Van Morrison? If you're Barrence Whitfield, you don't ask that question, you just cut loose with "Bip Bop Bip". After which, it's obvious you step aside for Professor Longhair and his spectacular piano playing on "Hey Little Girl". Then change direction, take a journey into a man's soul while Albert King performs "As the Years Go Passing by" It moved Eric Clapton so much he used the melody for the hook riff on "Layla."

Ready for a little fear and trembling? Get a load of Etta James singing "God's Song," written by that unassuming subversive Randy Newman. Hey, trembling is motion!

It might be wise to beat a hasty retreat to Blind boys of Alabama. You can't go wrong with anything on their "Spirit of the Century" album, but for the sheer unexpected brilliance of it, let's go with "Down in the Hole" written by Tom Waits. Then, if you're not afraid to have your heart broken, listen to Linda Thompson's elegant version of Waits' majestic anti-war plaint "Day After Tomorrow." Of course the Waits version is devastating, too. Your call.

Next we reach the still point in the center of a turning wheel where Martin Carthy sings a spell-binding acapella song of the cycle of the seasons called "The January Man."

Then cut loose with Richard Thompson Singing "Hard On Me." The words to this song could easily be about Parkinson's, but it's the unworldly, eloquent guitar solos that really express the rage and frustration of living in a body that refuses to move. His reckless playing lays waste to everything in a way that is frightening as it is cathartic.

Left amidst the chaos that music can describe, we find that it also offers grace. Where? Look to the work of J. S. Bach. In Bach, stateliness combines with surprise, joy with beauty, brilliant craft with exuberant inspiration. My brother credits Bach's music with saving his life as he battled depression. My Dad explained Bach's music this way "He was talking to God." And who can doubt that God listened?

Friday, December 5, 2008

It DOES take a brain surgeon, part 3: Drill, Baby, Drill!


The Armchair expert boldly returns to the topic of Deep Brain stimulation.

Q:
Can we assume your interest in Deep Brain Stimulation goes beyond idle curiosity?


A:
Unfortunately, yes. I plan to get evaluated as a candidate for the procedure this January in San Francisco. If the evaluation is satisfactory to all parties, it won't be long before they screw an immobilizing "halo" of steel to my shaved skull, drill two holes, and introduce hair-thin wires into my little gray brain. Did I mention that I will be wide awake much of the time?


Q:
Sufferin' Mother of... why in the world would you endure such an operation?

A: I now experience extended periods when I "freeze", my feet refuse to move, my voice becomes soft and slurred, my muscles become stiff and sore. I lose facial expression and, though consumed with frustration, am unable to storm about, yell and throw things. Also I have fallen a few times. The falls happen when I can't accept that my feet won't move, and I try to walk. Further, there is the matter of keeping to my pill schedule (at least one pill every waking 2 hours) And how about this- it appears the operation slows progression of PD in animals. Which I'll admit to being.

Q: They do this while you're awake?

A: Hey, would you let somebody rummage around your skull while you were asleep? I think not! Besides they need the patient to be awake and responsive so that they can assure the location of the implanted wire is ideal. This is confirmed by running a wee charge through the wire and asking the patient to perform simple motions.

Q: Simple motions, like writhing in pain?

A: It's the darndest thing, but while the brain senses damage to other parts of the body as pain, it doesn't feel pain when it takes physical punishment itself.

Q: What a weird organ!

A: True, but I wouldn't part with it. I have time for one more question in this installment... yes, you in the back?

Q:
When the operation is complete, will they seal the two holes they drill in your forehead with a couple of plugs that will cause you to resemble "Hellboy"?

A: According to my wife, yes.

Monday, November 17, 2008

It DOES take a brain Surgeon (Part 2)

In our last thrilling installment, the armchair expert parried the question "How does DBS work?" by referring to a helpful diagram, which you can find a couple of posts down. We now resume where we left off...

Q: You call that helpful?

A:
Hey, I'm doing my best here. I'd like to give you a better answer, but nobody knows why it works. Here's one theory: As one part of the neural communication network in our brain sends out fewer, fainter signals that say "MOVE" other parts of the brain that specialize in "STOP!" interpret the absence of "GO!" messages as a signal that "Stop!" is the agenda, and steps on the metaphorical brake pedal.

This dutiful but misguided part of the brain is the part targeted by the surgeon when the leads are implanted. The leads, in a sort of tiny replication of the Milgram experiment, zap the offending part of the brain with a jolt of electricity to discourage the hyperactivity. This enables freer movement, and subtly perfumes the air with the delicate odor of fried brain cells, which remind some people of bacon browning.

Q: EW!

A: OK, I made that last part up.

Q:
Right. How about another theory?

A:
Here's a simpler one from my friend Alec, broadly paraphrased. "The electrical charger creates noise in an overzealous section of the brain, impeding its operation" I think of this as similar to the "Beseiging-The-Bad-Guy-With-rock music-at-Painful-Volume" strategy our military used to force Gen. Noriega out of his diplomatically protected sanctuary back in the previous century.

Q:
Are you sure PD is your only problem?

A: I'll overlook that and offer one more explanation in diagram C. (BELOW)


(To be continued.)

Monday, November 10, 2008

The "Still Kicking File" Revisited



My Parkinson's motto is "I can do more than I think I can." This may not seem particularly inspiring... "All together now, let's hear it: PETer, PEter, He's OUR MAN! He can can do MORE than he thinks he can!" whoopee. Nonetheless, it is important to hold this belief, for two reasons. First, because it is probably true, which means you can keep doing things you enjoy and even try new ones. Second, I'll bet this straining against the surly bonds of Parkinson's Disease will help you to prolong your vitality.

If I must be on a downward spiral, I want those loops to be as wide and slow as I can make them. Which was how I found myself flailing on a mandolin for five and a half hours last Saturday night in a bar as a member of a Pogues-meet-the-Clancy-Brothers-on-Bill-Monroe's-Porch band we call Whiskeyjacks.

Was I afraid that I would freeze up and be unable to keep time? Yes I was. Was I spent and sore the next day? You bet. Was it laughable for me to pass myself off as a mandolin player on an instrument borrowed from my wife, on which I knew only three chords just a month ago? Apparently not. We caught fire during the last set and ended playing maybe an extra hour, and had the audience plying us with twenty dollar bills to give just a couple more songs.

Which we did. It was much more than we thought we'd do, and way more fun.

Monday, November 3, 2008

Coming up, a return visit from Seattle Neurologist Dr. Susie Ro

Hello friends, The Washington Chapter of the American Parkinson's Disease Association is bringing back Dr. Susie Ro for another patient care program. Don't miss this chance to ask questions of an expert! See you there,

Pete

Please be our guest on Tuesday November 18th,2008 at Alaska Regional Hospital for an Educational Patient Program with

DR SUSIE RO
MOVEMENT DISORDER SPECIALIST
SWEDISH NEUROSCIENCE INSTITUTE,
SWEDISH HOSPITAL
SEATTLE WA

11 am - 1.30 pm

Lunch will be provided and there is no charge for this event

Reservations required
Please RSVP to;
evedavis@gmail.com or 425-443-8269

Sincerely,

Evie
Evelynne Davis
Parkinson Educational Patient Program

Registration - 11am



Event Info
Alaska Regional Hospital
2801 DeBarr Road
Anchorage AK 99508
Alaska Regional Classroom, Medical Plaza, Mezz Level


Diagrams for post below. Click to enlarge.

Sunday, November 2, 2008

It DOES take a brain surgeon ( Part One)

Armchair authority fearlessly takes on questions about DBS

Q: "DBS"? WTF?

A: DBS is the acronym for Deep Brain Stimulation, a surgical procedure that lessens some symptoms of Parkinson's Disease in some patients.

Q: Wouldn't "Shallow Brain Stimulation" be called for with your particular brain?

A: Cheap shot. In this case, "Deep Brain" refers to anatomy, as the target area of the operation lies far inside the the brain. (See diagram A)

Q: "Some symptoms"?

A: An abbreviated list of symptoms that DBS works well for include tremor, rigidity, and slow movement. Among things the surgery does not seem to help with are balance, speech problems (which may increase,) and Parkinson's related dementia.

Q: Well that sucks

A: Tell me about it. As more experience accumulates, some of the early problems are now understood to be related to placement of the apparatus in the brain. Others, such as cognitive impairment may not be as consequential as previously believed. But is not a panacea or a cure for PD.

Q:"Some Patients"?

A: One has to be carefully evaluated by a neurologist to determine whether this expensive and somewhat risky operation will actually benefit the patient or just the surgeon.

Q:
Now YOU'RE making with the cheap shots.

A:
Sorry, I'll try to behave.

Q: How does DBS work?

A: See diagram B.

This ends part one.

Wednesday, October 22, 2008

FLASH MOLASSES in "What's that smell?"



Click on image for full stereo sound and high-def video. Actually, not. But it WILL enlarge.

Friday, October 17, 2008

Coming up...

Hello Friends, Here is what's coming up: Meeting TOMORROW 1:00 p.m. at the Senior Center. Betty will lead a separate session for care partners. The rest of us will have "Open Microphone" sharing where we are with PD. Coming on November 18, Dr. Ro, of Swedish Hospital in Seattle, will give a talk at Alaska Regional Hospital. The topic is to be announced. If you plan to attend please RSVP to 425-433-8269

Thursday, October 9, 2008

Dancing on Quicksand


So now I am "Former Daily News cartoonist" Peter Dunlap-Shohl. I knew this day was coming, and feared it. I've been cartoonist for the Daily News for so long, it was a major component of my identity. And before I became the actual Daily News cartoonist, I was an aspiring editorial cartoonist, going back as far as the fifth grade.

In the six years since my diagnosis, I have struggled to maintain my viability as a cartoonist. I've been dancing on quicksand, learning to use new programs and expanding into animation and increasing the writing I did for the paper. All the while trying to shrug off the weight of Parkinson's Disease as it dragged relentlessly at my every movement.

Then word came that our paper was looking for voluntary reductions in staff. Reductions that would be come involuntary should too few volunteers come forward.

After weighing my assets and liabilities, I decided that it was time for me to go. Time to step aboard, or maybe in front of, the Express Bus to the Future. Ironically, it is my experience with Parkinson's that helped absorb the blow.

After the initial shock and hysteria following my diagnosis, I discovered strengths, resources and skills I didn't realize I had. After surviving word that one has a debilitating progressive disease, loss of a mere job doesn't seem as momentous.

Plus I have a terrific support system of family and friends.

The upshot is that we are not brushing up on our street begging skills yet... although when we get there, we're going to have DESIGNER SIGNS, baby!

Saturday, October 4, 2008

Announcing "Frozen Grin" Pete's new blog


Having ejected from the mothership into cyberspace, I have established a new cartoon and humor blog "Frozen Grin". This will be the home of my future editorial cartoons and animations. I also intend to post a variety of creative projects here and am excited about the possibilities.

The first post is the web debut of my newest animation, XT and Me, the second installment of my blockbuster space trilogy. To see the new blog, just click here.

Pete

Wednesday, September 17, 2008

Thank you, may I have another?


I am facing a buyout at work. There is one head on the chopping block in our little subdivision of the newsroom, and three candidates, two old friends and me. I am in a position to force out one of the old friends with less seniority, but frankly I think it might be pyrrhic treachery, as it will mean more work for those of us left, and for me, less cartooning and more writing. If I go, the sad reality is that they will be able to plug in generic cartoons that come cheap from Outside. If I stay I will have to maintain a pace that will be blistering. This is at odds with Parkinson's, to put it mildly. To paraphrase the immortal Scotty (Who, by the way, had PD) I am not sure I can take warp 8 much longer.

Pam has cleverly been recognized as too important to consider parting with, so if I leave, we will retain insurance. We have savings, last time I checked. And there is about half a year of severance pay available for me. Furthermore, My son's college is free to families making under $75,000 a year. I believe that in 5 years, I will be able to begin collecting retirement.

And I have a shoe card at Skinny Raven with several stamps that will get me well on my way to a free pair of running shoes. And my sense of humor.
I have made no decision yet. Cue The Clash, "Should I Stay or Should I Go?" I will keep you posted.

Sunday, September 14, 2008

Our Next meeting...

Step right up, step right up, suspend your disbelief and hitch up your trousers, it's time for ANOTHER MEETING (Wild applause, whistling, shouts of approval.) The plan is to have nurse practitioner Mo Hillstrand as speaker. The time will be 1:00 on Saturday the 20th.


This was arranged by the folks at APDA so I don't now exactly what Mo plans to tell us but I do know that her practice is the one recently joined by the new neurologist here in town, Dr. Ellison.

Which segues neatly into the following HOT NEWS TIP: This selfsame Dr. Ellison will be the guest on "Line One, Your Health Connection, the local public radio health show. The subject will be Parkinson's Disease. It airs On KSKA fm 91.1 this Monday at 2 in the afternoon and again at 7. You can call in with questions during the two o'clock broadcast. Here is a general description of the show:


Host Dr. Thad Woodard and guests discuss a variety of health-related topics during this LIVE call-in show. Line One features local physicians and national subject experts from the fields of nutrition, childcare, pharmacology, surgery, psychology and more. Callers can talk one-on-one with each week’s guests and even participate online. Listen Mondays at 2:00 p.m. for the live broadcast or catch the rebroadcast at 7:00 p.m.


Your faithful servant,

Pete

Monday, September 8, 2008

Patience Pending


We people with Parkinson's are mavericks. We not only march to the beat of a different drummer, sometimes we don't march at all. In fact our theme song should be "I Ain't Marching Anymore" by Phil Ochs. Go with the flow? Not us. No flow, no go.


As members of a culture so manic that it has been forced to slice time into nanoseconds too small for any human to even perceive, we are the dissenting minority. While others multi-task all around us, texting their overfilled to-do lists to their partners while crashing their cars, we struggle to single-task, spending the morning buttoning our shirts or not tying our shoes.


This is role none of us are cut out for these days. Patience cannot be ordered over the Web and then delivered the next day in a brightly-colored Express envelope. Instead, we must learn it. And how do we do that?


Slowly.


Fortunately, we have many opportunities for practice. We spend countless minutes waiting for our meds to kick in. Dopamine brings a rush, but you can't rush dopamine.


Crossing a room can take on the quality of a major expedition, complete with danger. You may be in a hurry, but your feet are on their own schedule, and frankly, they're tired of being ordered around. They will get you there in their own sweet time. Push them too much, and you're going down hard, pal. They'll stick to the floor and you'll topple to their level with a thud that frightens everyone in the vicinity, with the exception of the mutinous extremities themselves. They're already safe on the floor. It won't be them that feels the pain. I don't know a single person with Parkinson's who has injured a foot in a fall.

So you learn not to rush your feet. They have the upper hand.

You want to practice patience? Try removing the cap from the bottle that holds the pills that enable you to take the caps off bottles. Hours of fun. The irony alone will amuse you for eons. Which is how long it will take to get to the pills.

The ultimate exercise for developing patience is the marathon wait for the cure. I remember a friend who bitterly observed that he had been assured that a cure was no more than a decade away. That decade has passed, and so has he. But bitterness sours the present for the sake of an uncertain future. So we need something to do instead of waiting. We have to work in the present to advance the progress toward the day when we can get back in the rat race with everyone else.

I'd love to just stop and smell the flowers, but ever the pranking poltergeist, Parkinson's even takes your sense of smell.

Saturday, August 2, 2008

Build Your Parkinson's word power! An Off & On series


As a lover of words, I've found Parkinson's Disease a source of fine specimens. Won't you join me as I hold a few up to the light and admire them?

Here's a beauty: Festination. It's the tag given to the shuffling swish-step that characterizes the typical PWP on a stroll. Your stride shortens, your gait increases, and pretty soon you're a festinatin' fool. It's annoying as hell to actually do, but doesn't it sound fun? Festive?

LEAD SINGER: "Brand new step, sweepin' the nation..."
BACK-UP SINGERS: "What's it called?"
ALL: "FEST-I-NA-TION!"
LEAD SINGER: "Just quicken that step and shorten that stride..."
BACK-UP SINGERS "Everyone loves that parkie glide!"
LEAD SINGER "Drive away dull care and frustration..."
ALL: "Everybody do the Festination!"

(repeat until you freeze or fall over)

Do you find that a little overwhelming? Perhaps what you are experiencing is Emotional Incontinence. There is no avoiding a bit of squirming when you encounter this coinage, which refers to a form of depression which involves experiencing episodic rushes of emotion wildly out of proportion to the stimulus. These rushes (for me at least) only occur in the company of others, and only when trying to discuss subjects that are loaded emotionally. It attacked me most often when talking with my son about family history or great musicians. Suddenly my face would screw up, my throat would choke and I would become unable to continue the conversation.

Confession: I enjoyed the cheap thrills this provided for a time. There was a sort of emotional drama that lent the illusion of great depth of soul to my everyday life. Over time it moved from entertaining to incapacitating. When it reached a point where I was getting ambushed by these gusts of sturm und drang with alarming frequency, it was clear it would be too much. So now I take a pill every morning to restore my normal shallow self.

One good thing about emotional incontinence. When you are so overwhelmed that you can't speak, you don't have to worry about Logorreah. Most of you don't worry about this under any circumstance, but I do when my meds are cresting and I spray words, thoughts, and incomplete fragments of both in the direction of innocent helpless persons, most often my wife. Then I have to clean up.

That wraps up this installment, must keep that logorrhea in check! We'll return with other great PD terms soon.

Wednesday, July 23, 2008

AooOOOGA! AooOOGA! Special Meeting!

Hello Friends,

Apologies for being so late in gtting this info to you, but here it is! PD specialist Dr. Alec Glass will meet with us at 7:00 pm THIS THURSDAY July 24th in the Quadrant Room of the Captain Cook hotel. He has prepared remarks on Parkinson's and depresssion, and will also speak on gene therapy.

The Quadrant room is in the Hotel's "Lower Lobby" (Read: Basement) just underneath Fletchers.


Best,

Pete

Saturday, July 19, 2008

My Secret Shame


It's confession time. Time for owning up to my tawdry hidden vice. Time to tell the world about my deep character flaw. Time to cleanse my sinner's soul in the healing waters of truth.

It's not pretty, I'll forgive you if you choose not to read on. But as Bob Dylan sang "There comes a time when even the President of the United States must stand naked." So stand back while I (metaphorically) drop my drawers.

This particular vice of mine takes me over, possesses me, when I am on my bicycle. It happened again this morning as I labored up the long, shallow grade from my pharmacy to my house. I was about halfway up the mile-long climb, and in a mild "off" state when I spotted them about a hundred yards ahead: a fit-looking couple my age or younger, pedaling their way up the path ahead of me. The distance swiftly vanished and I passed them with a cheery "Hello" while in my heart, I experienced secret gloating glee, intensified to a bright glow as I overtook a third well-outfitted rider soon after.

I know, I know... they are not that different than you and me. And where's the merit in besting them in a contest they don't even know they are in? But I can't help myself, I'm only human. Is it really so wrong?

So here it is, judge me if you must. I am weak. I cannot stop myself.

I make sport of the undisabled.

Sunday, July 13, 2008

But WAIT, There's more...

Hey one and all. It's a jam-packed July. We had a great talk from Dr. Elmer, courtesy of the Washington branch of the APDA. Our next meeting will be the picnic, which Lory has graciously volunteered to host at her home on the lake in Wasilla. The event will be the 19th, which is next Saturday, from 1:00 to 5:00. Lory asks us to bring salads, desserts and side dishes. Directions still coming. Lory?... how do we get there?

In other news Dr. Alec Glass, a motion disorders specialist is going to visit with our group. He is preparing talks for us on gene therapy, and also on depression. Dr. Glass is very interested in trying to establish a consulting practice here in Alaska. The hope is that while here, he will be able to make contact with local Neuros, and work out an arrangement with them to travel here regularly and provide expert care. I met with Dr. Glass while I was Outside getting my head examined, and was favorably impressed. Details on when and where we will meet with him still to come, but it will likely be Thursday evening, July 24 downtown. By the way, while he is here, he will be giving talks to doctors at both hospitals on PD issues.

FLASH MOLASSES episode 5




Click to enlarge

Sunday, July 6, 2008

Upcoming presentation: The next revoluton in therapy

Hello friends, fellow travelers, and those of you who pulled this page up by accident. Our pals The Washington Chapter of American Parkinson Disease Association are following up the well-received talk from Dr. Susie Ro with another promising program: "The next revolution in patient care."

Wednesday, July 9th, 2008 at Providence Hospital Room 2281 U-Tower, Providence Cancer Center Anchorage, Alaska 11am—1.30pm

SPEAKER: Dr Larry Elmer Movement Disorder Specialist Toledo. Ohio

Registration: 11:00 am

Reservations: evedavis@gmail.com or 425-443-8269

Lunch will be provided -

There is no charge. Thanks to Teva Neuroscience for Sponsoring this Event.

Our meeting for this month will be the annual picnic, which Lory has volunteered to host. More on that soon.

Also coming this month Dr. Alec Glass, a movement disorders specialist who will meet with us and share information on gene therapy and PD, and on depression as well. Information on time and location to follow.

Monday, June 30, 2008

Carping Tunnel-Vision Syndrome



ABOVE: Shipwrecked by Parkinson's Disease


As a cartoonist, I carp for a living. One of the hazards of my job is that the first thing I do each day (after the ritual swallowing of pills and a trip to the bathroom) is look to see what the worst news is in our paper. From the Supreme Court to the lowliest local pol, I begin my day with the malefactor who did the most damage since the last time I checked. (By the way, did you notice that I'm ALREADY carping here? I'm a natural!)

This is like startin' your mornin' with a steamin' hearty bowl o' hot, nutritious worms. After a while it colors your attitude toward humanity. God only knows how the reporters who cover the courts and child welfare avoid becoming misanthropes, and I suppose many do.

Paradoxically, Parkinson's Disease has been the antidote for my case of mild misanthropy. While I loathe having this disorder, it has provided a mirror image alternate to the viewpoint brought on by watching the bozo parade.

Instead of dwelling amid the latest creative disasters of the inept and the evil, I'm a Gulliver in reverse. Being shipwrecked by Parkinson's Disease has fetched me up gasping and coughing on the Island of the Caring and the Competent.

It is another world. The inhabitants there are the likes of our friend Betty. Betty lost her husband to Parkinson's Disease. As far as I am concerned enduring that earned her a free pass on ever having to face PD again. Betty disagrees. She has volunteered for years as the voice of experience to care partners who need light on their lonely road. She often leads separate sessions for them during our monthly support group meetings. It is one of the most important services our little Parkinson's club offers.

It is the world of Dr. Dave Heydrick, a neurologist with Parkinson's who has put his intelligence, humor, charm and discipline into the mission of uncovering all he can about coping with PD and passing his learning along to the rest of us. Dave is a man who provides those of us drafted into this battle with the precious and indispensable commodity of credible hope.

It is the world of Bill Bell. When Bill's mother got diagnosed, Bill became her advocate. On finding so little support for area people with Parkinson's and their families, he went on to become an advocate for everyone in the Pacific Northwest. Smart, and an unusual combination of the good-natured and the hard-nosed, Bill put his talent and energy into running the Northwest Parkinson's Foundation. His newsletter now goes around the world, but he still seems to know and take an interest in every person with Parkinson's in the Northwest.

It is the wider world of researchers and doctors who devote amazing creativity, skill and discipline to taking care of patients and taking this disease down. To read about deep brain stimulation or gene therapy is to glimpse what seems like science fiction come alive.

I can't say I'm happy about the circumstances that brought me to this place where the people are busy trying to make the world better, and succeeding at it. But I'm amazed and grateful that it exists.

Sunday, June 22, 2008

Wednesday, June 18, 2008

Coming Attractions: Anchorage Parkinson's-o-Rama!

Hello friends. Here's what's coming in the near future:

Tomorrow, JUNE 19th Dr. Susie Ro will give a talk on non-motor aspects of PD. The APDA folks in Seattle tell me that "In case you are not familiar with her, Dr. Ro is a fellowship-trained movement disorder specialist who gives a great presentation on the non-motor manifestations of PD. When Dr. Ro has given this talk in the past, she covered the major non-motor symptoms that can be associated with PD: cognitive changes, sleep disturbance, depression, speech changes, constipation plus a few others. The information is presented from the perspective of creating awareness for the patient so that they can seek appropriate treatment if they recognize any symptoms. She also tries to broaden awareness that PD is much more than simply a disease with motor symptoms. I can't say enough good things about her." This event will be at the new Cancer Center on the Providence campus. The Cancer Center is located off of 36th, to the West of the main complex, and East of Lake Otis Blvd. Look for the Media Center Room 2281 U-Tower, Providence Cancer Center


We have another presentation from a visiting movement disorders specialist July 9. Dr Elmer will speak on "Parkinson's 2008: The NEXT Revolution in Therapy." This is another effort from the APDA in Seattle to do outreach to we far-flung northern PWP.

We are also looking forward to meeting with Dr. Alec Glass of San Francisco, who is very interested in enhancing care for Alaska Parkinson's patients. This will entail a special meeting around July 26 or 27.

Whew! Hope to see all of you at all of these functions. Oh! Which reminds me, I will not be at the meeting this weekend, but people are welcome to meet as usual at the Senior Center to have an informal session.

Your humble, yet indefatigable Pooh-Bah,

Pete

Tuesday, June 17, 2008

Pete's PD Portraits #5: Mervyn Peake




This one is goin' out to my friends at PDUK. I hear the rest of you out there murmuring "Mervyn Peake ? Who in blazes was Mervyn Peake?

Glad you ask. Peake was one of the most formidable of those rare creators who earn distinction in more than one field. A talented writer and visual artist, the only comparison that he calls to mind is William Blake. Talent, style and good looks, Peake had it all, including Parkinson's.

Friday, June 13, 2008

I Only Pass Out in the Best Places


I am under strict orders from my son never to do this again. We were dining with family, and I was enjoying a beer and a well-prepared meal in a sunlit restaurant in exotic Kirkland. As conversation wafted around I became distracted by an odd sensation in my stomach, a feeling akin to what you might experience if you swallowed a live and angry badger.

My initial Badger Pacification Strategy (BPS) was denial. Skip this tack should this happen to you. It's useless. As the situation rapidly deteriorated, I adopted BPS #2: Lowering my head to the table in an attempt to control the mounting nausea. You might want to skip BPS #2 as well. No help.

It became clear that I was down to two choices. Release the "badger" in our cozy booth, (BPS #3) or make for the restroom and return the little guy to the wild via the porcelain porthole (BPS #4). Clearly there is no scenario under which #3 could be defined as successful, which left only a desperate attempt at #4.

Thinking quickly I enlisted Pam as my handler, the better to spread the inevitable blame when the doomed mission went grandly awry. I rose decisively to my feet, and then (I'm told) crumpled decisively to the floor (BPS #5)

Miraculously, BPS #5 worked great. At least on the badger. But one doesn't crumple to the floor in the middle of a restaurant discreetly. A hullabaloo followed. People were summoning help via their cell phones before I hit the carpet. When I came to, I looked up into a circle of unfamiliar and concerned faces. They assured me that the paramedics would arrive soon, and hovered close until they arrived.

I was still gathering my wits when the team showed. They lost no time in festooning me with wires connected to machines that read vital signs. I was feeling much better and after explaining about the hazards of rising too quickly when on Parkinson's medications, which can lower blood pressure and cause fainting, I managed to talk them out of taking me to the hospital.

This moment of helplessness paradoxically granted a measure of hope. We are bound to one another by our frailty. Confronted by my small catastrophe, strangers responded with swift compassion.

I wobbled out of the restaurant under my own power but with my family arrayed in close formation around me. As we wound our way to the door, I carried a new intimacy with the anonymous throng returning to their dinners.

The barriers had been breached, and as we left, it was possible to sense a common thought that clearly ran through the minds of many: "Damn, I hope I didn't order whatever HE had!"

Thursday, June 5, 2008

My Own Cato




Clouseau moves warily through his silent apartment. His sixth sense tells him danger is poised to explode, and it could come from anywhere. Every narrow hallway, every closet door, any hidden space large enough to conceal a crouching man may contain Cato.


Cato has been commissioned by Clouseau himself to stalk and attack the inspector without warning, and when he least expects it as a form of training. Just as addled as his adversary, Cato lies in wait. But where? Surely not the refrigera...

As the dooor cracks open Cato erupts from inside in a shower of frost and fury! He rains blows on the hapless detective with icy hands. Havoc, treachery and mayhem ensue, which both men seem, perversely, to enjoy.

CUT TO...

Pete wanders obliviously through his house. Every doorknob, every corner on a counter top holds the potential for sharp and unexpected pain as his body responds to signals from his brain that cause exaggerated dance-like movements in his limbs. The complex and unconscious calibrations that we all make in the banal act of passing through space are thrown off in the interplay between disease and medication.

But when the meds kick in, it's easy to forget that. Why? Because, darn it, it feels so great to move! Until an arm swings wide and slams into something hard or sharp. Then it feels great to spout profanity with your amplifier up to 11.

It's painful and exasperating to suffer one's own unintended violence. But let's face it, it's also funny. To have Parkinson's Disease is to live a life of improv slapstick. Congratulations, you've landed both leading roles, You're Cato and Clouseau.

Monday, May 26, 2008

The best advice you'll ever ignore


If you could ask a smart, well-trained Parkinson's Disease specialist one question, What would it be? I was in a position to do that recently thanks to my friend Dr. Mary DeMers, who arranged for Pam and me to attend a talk from Dr. Stewart Isaacson, Director of a movement disorders clinic in Boca Raton. Dr. Isaacson was in town to educate the local medical community about developments in Parkinson's care.

As the designated Parkie, I wondered how to get the most bang for my question buck. I wanted something simple and powerful that I could take back to my support group. So I asked something along the lines of: "What is the one thing that your patients could do to cope better with PD that they don't do?"

Without hesitation, the doctor shot back an answer. I expected a reply that might have something to do with managing our pills, or informing ourselves about our disease. Nope. His reply was one word.

What he said was...

(Are you ready?)

What he said was....

(Got a pencil? you may want to write this down!)

What he said was...

(and I quote)

What he said was...

(WARNING: You're not going to like this.)

What he said was....

(OK, here it is.)

What he said was: "Exercise."

Wednesday, May 21, 2008

Encounter with the supreme identity thief


Remember the "Me Decade"? That's what writer Tom Wolfe christened the 1970's . It was fashionable at that time to attempt to "find yourself". This was a common pursuit of the day, and a weird one. It conjures the idea of some tragic mix-up in the maternity ward in which your true self went home with the wrong family and then moved across the country without leaving a forwarding address.

Eventually it would fall to the strong and the brave to go out and track their fugitive self down, like an escaped con. As with any great quest, this one was fraught with difficulties. It's a given that your real self would be found somewhere more exciting and exotic than wherever you were at the time, but where? And how would you know when you found your true self? What if you found somebody else's true self and mistook it for your own? You might live the rest of your life as someone else, and never know. Which for some might not be a bad idea.

Most people gave up or got over it by the mid eighties. And it was never much of a problem for me. I always defined myself as an Alaskan, and a cartoonist, and later expanded into husband and father. For the most part, what I did was who I was.

Then came Parkinson's Disease, the identity thief supreme. I was a guitar player who didn't play the guitar, a cartoonist who was struggling to draw, a father who was too tired to cook or to even stay up and share a movie, a husband who was cranky and listless. (See my pal, the ogre here)

"Finding yourself" seems like a foolish game. Losing yourself is terrifying.

Eventually diagnosis and medication restored much of my original drive and personality. But Parkinson's is a moving target, and medication only approximates what my friend Dr. David Heydrick calls "The exquisite precision" of the dopamine controls of the human brain. And as we know too well, the medication eventually becomes as problematic as the disease.

But, for now, the person I think of as the real me, does glint out occasionally and briefly, from between the manic, nattering chatterbox I am at the crest of my dose and the semi-paralyzed zombie I become at the ebb. Like a canny performer, he always disappears before wearing out his welcome, leaving Chatterbox and Zombie Man in a state of anticipation about the next appearance .

The question isn't "Who am I?" or "Where am I?" It's "When am I?"

Wednesday, May 14, 2008

Meeting the 17th

Hey everybody, this week's meeting snuck up on me, but, yes, we will meet at the Senior Center this Saturday, the 17th of May at 1:00 p.m. Program undetermined at this moment, but give me a little time and I'll gin something up.

See you then,

Pete

Tuesday, May 6, 2008

Would you like a shot of adrenalin with that?


When I was a teen, I thought my Dad was an idiot to bicycle to work. For one thing BIKE is to ANCHORAGE DRIVER exactly what RED CAPE is to BULL. Ask my son. More to the point Dad owned a sleek emerald Datsun 240 z sports car that not only looked fast standing still, but also could fit my sister, her 'cello, my sister's friend Leslie, and Leslie's viola, with room left over for Dad to drive.

Dad would forsake all this for the hard seat of his 12-speed, pedaling off to the hospital at all hours in the long subarctic twilight of summer.

Sadly his idiocy seems to have been passed down to me, in an even more virulent form. As I ride to work in the morning, the soundtrack is the rhythmic rattle of my medication. So in addition to cyclist=red cape, we have a sporadically spastic moron with compromised balance aboard a two wheeled contraption that shouldn't even work for a healthy person.

My neurologist has told me twice that the physics of cycling are not understood, and in fact, that it shouldn't be possible. That's incentive enough for me right there. For some reason, I experience a better sense of balance aboard my bike than afoot. I am more likely to lose my balance putting on my socks than pedaling my way to work. I feel trapped in a car this time of year. On a bike, I'm free.

There are times though, when I think twice about the wisdom of this habit. Let's replay the phone call I made to my wife shortly after leaving the house yesterday.

Pam: (groggily) Hello?

Peter: Hi, I'm at turn-off for the Science center, There's a BIG (Expletive deleted) BLACK BEAR down the road bank and across the pond.

Pam: (Alert) Should I come get you?

Peter: No, I'm leaving RIGHT NOW.


There were plenty of cars and people around, I wasn't that worried. The real moment of terror for the day was about twenty five minutes later, two blocks from work. An enraged Yorkshire Terrier/wolverine cross chased me at top speed (for both of us) a good 500 feet. Less dangerous than a black bear, you say? Maybe, But much more inclined to bite!

Sunday, May 4, 2008

Coming Event: Dr. Susie Ro to give patient seminar

Hey Folks mark your calendars for THURSDAY JUNE 19th, when Dr. Susie Ro will present an educational program on non-motor symptoms of Parkinson's Disease. Dr. Ro practices at Swedish Hospital in Seattle. To make reservations, email evedavis@gmail.com, or call 425-443-8269

Registration begins at 11:00 a.m., Lunch will be provided.


This event made possible by The American Parkinson's Disease Association and Teva Neuroscience

Tuesday, April 29, 2008

Handy Doctor's Guide of Stupid Things to Avoid Saying


Don't get me wrong, I trust and like my doctor. Otherwise I would find somebody else. But there is an appalling number of stupid and cruel remarks related to me over the past few years that fellow patients have heard from their doctors. These patients and their loved ones are often bitter about these thoughtless wounds, and as you read some of the remarks below, you will understand. (Note, these are paraphrased from the original sources.)

The reassuring physician, answering a patient's question about whether he would adjust to a new medication: 'You will be dead before your body gets used to it.'


The reassuring physician II:
'You have Parkinson's, but at your age something else will pick you off before it becomes a major problem.'


The careful observer:
'Come back next month, you are no worse than the last time I saw you.' In actuality the person in question was so much worse he was nearly immobile.


The blithe optimist:
'Let's give this new medication a try, there will be no side effects.' The patient suffered more from the new meds than from his Parkinson's Disease.

The cheery prophet, on being informed about a patient's positive mood and symptomatic improvement following exercise: 'That'll disappear in a few years.'

The gimlet-eyed skeptic: 'That's not a real tremor, you are making your leg do that.'

Others have told me of being given their diagnosis through a burst of laughter, of being given the shove test by several doctors without a word of explanation, and of being locked up by a crew at an emergency room, accused of taking drugs, and told that they were going to remain locked up until they were ready to tell what they had taken.

I am grateful for the hard work of smart, dedicated people who have mastered the techniques and knowledge that keep me functioning at the level that I maintain. I appreciate the difficulty of a general neurologist who must treat everything from migraines to MS. And I can imagine the chronic frustration that must come from being forced to manage the decline of people you wish you could cure. Throw in the many failings of the health care system as we know it here in the U.S. and I can see why both of my parents, one a surgeon and the other an anesthesiologist, discouraged their children from a career in medicine.

I grant all that. But it will take someone smarter than me to understand why people who are enduring what can't be changed should be subjected to additional pain that can be easily avoided.

Sunday, April 20, 2008

From the "Still Kicking" file


Much to my surprise, life is still going on six years down the road from my diagnosis. I was caught off guard last month when I learned that the Alaska Press Club had chosen to honor me with its second annual First Amendment Award. Which meant giving a speech.

Various worst-case scenarios flashed in front of my eyes: Freezing, shuffling up to the lectern and whispering. Or speaking loudly and clearly, and saying something brainless. (Opening joke considered and rejected: "Boy, am I glad I had speech therapy!" And yes, I did practice my kegels as much as my speech.)

As it turned out, the scariest thing that happened was that I had to follow the fabulous Leonard Pitts.



Here is what I said.



At a time when so many distinguished Alaskans are quietly thanking their stars for their 5th amendment right to remain silent, it's great to be at an event that celebrates the right to speak out.

The best way for me to tell you how honored I am to receive this award is to say how proud and excited I was last year when you gave the first one to my friend John McKay.

This award recognizes more than the work that I have done. The cartoons that I have created absolutely would not exist without the extraordinary support of a line of editorial page editors who appreciate what both of our jobs are about. They have been my coaches, my teachers, and my friends.

Editorial cartoonists are becoming the rare Ivory-billed Woodpeckers of the journalism world. The fact that the Anchorage Daily News supports a staff cartoonist is unusual to say the least. So this award also recognizes the commitment of the management of the Daily News and McClatchy, from Pat up the line.

And I would be way out of line not to mention my wife Pam, whose foresight, smarts and patience have kept me drawing way past the time Parkinson's would have sidelined me.

There's a story about an irascible old Hearst editor, who, when asked "Is a cartoonist a journalist?" replied "Is a barnacle a ship?" The ship here is a bunch of smart, dedicated and courageous reporters and editors at news organizations across this state doing the job of digging up the news. Or, as I think of it, "my material". Maybe "leech" would be a better term than barnacle. But of course, when it's time to keel-haul somebody, it's good to have a few barnacles on the hull.

The whole idea that someone can make a living making drawings is improbable - and wonderful - enough in itself. But as I look back over a quarter century it seems even more amazing when I remember the depressingly regular bulletins announcing the imminent death of the newspaper business. And we can look back farther to see obituaries for the newspaper being written back when radio and TV were new. And now Radio, TV and print journalists are all together in our boat, sailing toward what often seems like Web Armageddon.

But, silver lining! Armageddon is terrific copy. In fact, many years ago a bunch of reporters were gathered in the Mermac lounge debating the question of "What would be the greatest news story?" They were settling on the grand finale, the final world-ending confrontation between light and darkness, good and evil, Coke and Pepsi,... when it hit then-reporter Howard Weaver that he had a better story he wanted to tell. The story of The Creation.

Dateline: The Void. In the beginning was the word. A journalist has to love that.

Well lucky us! That is right where we are this very moment. We are being showered with new tools and opportunities to tell stories. Those of us in this room will invent the techniques and sort through the values that are the template for those that follow. The advent of the Web made it possible to redefine myself from cartoonist to cartoonist/writer/musician/animator at a time when PD has been tryng to define me as "disabled". Imagine what it can do for you.

Seize those tools, those opportunities. Because we have a job to do.

Today, in addition to the familiar enemies of free speech, we have a new one: The combination of trivialization of the news, compounded by the raw sewage being dumped into the debate that obscures everything from the truth about Global Warming to the truth about John McCain's non-existent bi-racial love child. All of which festers on the Web which happily disseminates lies and truth without discrimination.

This leaves the distracted and harried citizen with a huge problem when it comes time to make the judgments that democracy requires. Many decide it's not worth the trouble.

This was brought home to me most forcefully by a ruling from Judge John Sedwick in a change of venue decision in the Kohring trial. The judge found that there was no need for a change because, quote:

"To put it bluntly, a surprising number of prospective jurors are just not interested in, and do not follow, local news. "Many don't even read local newspapers. Many do not watch the local news on television. Among those who do read the newspaper, many simply glance at the local news headlines while moving on to areas of interest such as sports or gardening."

To which I would add "OUCH!"

The trivialization and pollution of the news leaves the First Amendment vulnerable in a way that is particularly ignoble. With little of actual significance to protect, it will wither. With little of actual significance at stake, what's the point?

It's up to us to make sure that doesn't happen. I can't imagine a better group to entrust this to. Alaska journalists are smart, dedicated and creative. We've got a limitless supply of compelling stories to tell in this state. We've got exciting new ways to tell them.

Our craft is essential, as the founders recognized in amending the Constitution to protect it centuries ago. It's no less important now. We must engage citizens in the job they have to do. If we manage that, we will do work worthy of the protection conferred by the First Amendment.

And that is the best we can do.

--

Sunday, April 13, 2008

Upcoming meeting, Aprl 19

Hang on to your hats, folks , We've got a speaker coming in that will leave you spellbound! If you take as many pills as I do, you'll want to be there when John McGilvray, BS, PharmD, CGP, FASCP, BCPS comes to share his knowledge of PD medications. Here is a taste of his background.

CURRENT POSITIONS

• Senior Clinical Pharmacist; Primary Care Clinic Pharmacy, Alaska Native Medical Center (ANMC), Anchorage, AK
• Preceptor for Pharmacy Residents, Drug Information
• Preceptor for PharmD Students, Ambulatory Care

EDUCATION

2007 (Oct.) American Society of Consultant Pharmacists Foundation Parkinson’s Disease Pharmacotherapy Traineeship, Movement Disorder Clinic, Feinberg School of Medicine, Northwestern University, Chicago, IL.
2006-present Board of Pharmaceutical Specialties; Board Certified Pharmacotherapy Specialist
2004-present Commissioned Corps Readiness Force modules complete
2002-present Fellow of the American Society of Consultant Pharmacists
2001-present Certified Geriatric Pharmacist; Commission for Certification in Geriatric Pharmacy
1997-2001 University of Illinois at Chicago, Doctor of Pharmacy Degree with High Honors
1974-1977 Northeastern University, Boston, Massachusetts, Bachelor of Science Degree in Pharmacy and Allied Health
1972-1974 Massachusetts College of Pharmacy, Boston, Massachusetts, undergraduate study

In addition, the fabulous Betty Berry will lead a separate session for caregivers. It's all happening at the Anchorage the Senior Center, 1300 E. 19th Ave. The time: 1:00 in the afternoon on Feb. 19.

See you then!

Pete

Thursday, March 27, 2008

R.I.P: The Ogre Who Says "No."


Who was the Ogre Who Says "No."? Well, for quite a while, he posed as me. This ogre alter ego crept into my character with patient stealth. The Ogre Who Says "No" set up shop in my head masquerading as the voice of reason. When someone had to play the heavy, the adult voice of delayed gratification, the Ogre was resigned but resolute, and stepped in.

He could be counted on to point out why we should stay home instead of going out, why we didn't need pets, or why we weren't saving enough. The Ogre phrasebook was full of lines like "Sure, but..." and "Do we really..." The Ogre was fluent in several languages because he only had to master one word. Nein, nyet, non, no.

The ogre was no dummy, and often had a point. The truth is that there are always good reasons to say no to just about anything. And that definitely includes saying "no" to the Ogre, who was a pain in the ass to live with. The Ogre had no joie de vivre, and without joie, vivre is thin gruel.

Can I blame Parkinson's for the coming of the Ogre? Probably not entirely. But the Ogre was not me. My Dad even noticed and was disturbed enough to contact my sibs asking if they had noticed that I had lost my "Ebullience." And given that the Ogre keeled over and died around the same time I got up to snuff on my Parkinson's medications, it's hard not to associate the two.

We buried the Ogre in a simple pine box. We never leave flowers. He wouldn't approve. But we do visit his grave now and again to honor him, and to reflect on his last words, carved on the cold granite of his headstone: "Carpe Diem".

Monday, March 24, 2008

London calling?


Enigmatic message left on my answering machine: "This is Dave Henry in England. I'm trying to get some information about Parkinson's. I'll speak to you later on, OK? OK."

This was two weeks ago.

"Watson, what do you make of it?"

"The fact that you don't know a soul in the UK by that name suggests that this person came across you on the internet, perhaps on this very blog. Furthermore, the fact that he tracked you all the way to Alaska suggests intelligence, tenacity, and perhaps, urgency."

"Very good, Watson, But why would he need info from a guy in Alaska, when there are excellent resources in Europe? (for example here) And more disturbingly, why has he failed to follow up?"

"Great Scott! Do you suspect foul play?"

"Either that, or he's having a whale of an "Off" period."

"Blast it, what can we do?"

"We wait, and, one more question, Watson..."

"What's that, old man?"

"Why do we refer to it as an answering machine, when all it does is leave us with questions?"

Monday, March 17, 2008

"HOWYADOIN"?


I realize this is over the top, but even before my diagnosis, the question "How's it going?" used to plunge me into a swirling metaphysical struggle where the imperative to tell the truth collided with the imperative to be polite. Like most people, I went with politeness.

(We'll have a brief pause here while those of you with smart mouths hoot your disbelief. Are we through now? Good.)

This deference to courtesy came at a stiff personal cost. I had to bite back choice lines like "Oh, the usual quiet desperation, you?" Or another favorite, "Filled with fear and loathing." And let's not forget the cheery, optimistic "Clinging to sanity in a world gone mad."

The discovery that I have PD simultaneously validated those unspoken replies, and rendered them obsolete. A whole new army of unvarnished truths have to be beaten back. A few of my current favorites "Suffering an irreversible slow-motion brain injury, what's up with you?" Or, "Working hard, hardly working." Then there is the clinical "Oh, a little dystonic, bradykinetic, and depressed." Or when the meds are working "Adequately medicated, thanks!" Which lead me to what I have settled on as a reply that seems to satisfy both truth and courtesy: "Adequate, thanks."

For some reason, this usually elicits a laugh, but I have decided it's probably best not to ask why.

I know I am not alone in this. Anyone who has come up with an answer that solves this small but persistent problem in a tidy and honest stroke of inspiration is invited to post a reply.

Adequately,

Pete

Tuesday, March 11, 2008

Sunday, March 9, 2008

APDSG: Our next meeting March 15

Hello friends, we will have our regularly scheduled meeting this coming Saturday, March 15. There is no speaker, and I think it's time for yet another of our "We're the Experts" tip-swapping sessions. Let's all come with one trick or bit of info that you have found helpful in your struggles with PD that others may not know about. An example of the kind of thing I am thinking about is Lita's great tip that regular gum-chewing can help with speech and swallowing difficulties. I've been chewing gum ever since I learned this, and I have yet to shut up. Ask Pam.

In other news, efforts to bring up a motion disorder specialist to give some ongoing education classes to local medical professionals are coming along. We have a well-trained doctor who practices with the VA and a the neurological division of UC San Francisco who is eager to come. II put him in touch with the doctor who is in charge of "Grand Rounds" the education effort for multiple hospitals here. Stay tuned for further developments.

And while we're on the subject of bringing in medical expertise on PD, I am psyched to pass along this from the APDA Seattle office:

The Washington Chapter of the APDA and Teva pharmaceuticals are still very interested in bringing patient education programs to Anchorage
Right now, we have a tentative schedule – and I will firm this up as soon as more info is available.
July 8, 9th – Lawrence Elmer, MD Neurologist from the Cleveland Clinic
September 19, 20th – Susie Ro, MD Neurologist from Swedish Hospital


Looking forward to seeing all of you next Saturday,

Pete

Pete's PWP Portraits No.3: Muhammad Ali


An interesting project for me. While working on this drawing I noticed that his left eye seemed to say "I regard you with interest and professional detachment." His right eye seemed to say "I want to hit you so hard, your descendants will bear bruises for three generations."

Wednesday, March 5, 2008

Tell Your Story

One of the maxims of the news biz is that everyone has at least one great story to tell.

Here's your chance, courtesy of the American Parkinson's Disease Association:

New APDA Young Parkinson’s Web Site

Submit Your Story
Could you be one of our new “Faces of Experience?” Have you been able to: effectively manage your symptoms, develop a particularly strong support system, participate in a clinical trial, become an advocate…? How did you do it? If you were diagnosed with PD at a young age, you and your family may be able to help others adjust to certain aspects of living with the disease by sharing your unique experience with them.
Stories received may be featured on www.youngparkinsons.org or in other APDA publications. Please submit all stories with the subject line “Story Submission” and email to: info@youngparkinsons.org

Tuesday, March 4, 2008

Motion Denied!


Denial. That's a word that sums this freaking disease up. Speak? Denied. Nod? Denied. Smile? Walk? Run? Denied.

Michael Kinsley, PPWP(Pundit Person with Parkinson's) wrote a column for Time in 2001 explaining his choice then of denial as a strategy. Here is a sample:

"When I got the diagnosis eight years ago, I chose denial. If ever you're entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business. I couldn't tell you some of the most basic things about Parkinson's and how it works... If you fool yourself skillfully enough, you can banish thoughts of the disease but retain a liberating sense of urgency. It's like having a Get Out of Jail Free card from the prison of delayed gratification." Look here for his entire article.

The argument is creative, humane, beguiling, and wrong. Outdated may be a kinder way to put it. Consider this: It is now clear that there is a long latency period, likely over a decade, during which quiet damage occurs. Researchers believe that somewhere between 50-80 per cent of dopamine generating cells in the substantia nigra are kaput before symptoms emerge. So you've already had your denial period before you even realize there is a problem.

So go straight to panic, anger, and suffering.

Kidding! Kidding! Here is the good news. There is growing evidence that we can influence the course of the disease by means within our power. Exercise has some serious anti-PD mojo, Reducing stress and following the Mediterranean diet are looking promising. Denial will delay serious efforts on your part to act in ways that can raise and extend your quality of life.

Denial (and fear) can also make you slow to join a support group. This is a mistake. People at your local support group are PD experts in ways that the best doctor just doesn't have the experience to understand. And there is nothing they would rather do than share what they know with you,

Get over denial. You owe it to yourself and those that care about you. If you can buy some quality time by paying attention and taking care of your body, it's time earned. It may be uninspiring, but nobody lies on their deathbed thinking "If only I'd eaten less broccoli and not done so much exercise."

Friday, February 29, 2008

Tuesday, February 26, 2008

You can do more than you think you can



ABOVE: Homage to Sylvain Chomet

Alzheimer's is the forgetting disease, but there is something that Parkinson's keeps making me lose track of: The fact that I don't have to quit doing what I enjoy because of PD. It's true that lots of my old skills don't measure up to their former levels, But as G.K Chesterton said, "Anything worth doing is worth doing badly." This was a defense of amateurism, but by all that is shaky, it also applies to living with PD.

I love riding my bike, I used to do a regular 22 mile round trip commute on our wonderful network of Anchorage bike trails. When I was diagnosed with Parkinson's,I was especially glum about the prospect of losing my ability to balance. No balance, no bike. I kept at it for awhile, then had to sit out most of a rainy season. When the next season rolled around I talked myself into the idea that I couldn't ride anymore.

I was working at home one day a little while after I reached this dispiriting conclusion. My son had driven to school and Pam had taken the Jeep to work. The phone rang, and when I picked up, I was told by the head of security at my son's high school that we had "A Situation" with his car. She explained that a roving security guard had peered into our Subaru and spotted a weapon. Said guard had the car staked out and could not leave until I dealt with the situation.

Calling me to let the guard return to "roving" mode was actually plan "B". The original idea was to jerk my son out of the middle of his AP economics test and have him retrieve the forbidden implement of destruction. Sanity prevailed, in the form of an alert assistant principal who knew that this kid would not be a threat to the school if he had a bazooka in the car. (Come to think of it, the car itself was a bigger threat, but he can explain that to you himself here)

Which was how I ended up telling an extremely unhappy head of security that, having no car, I would walk right up and take care of things, but since I had Parkinson's Disease, it would be about 45 minutes. This naturally left her delirious with happiness. At least I think it was happiness.

I trudged into the gloom of the garage to put on my shoes and the dull gleam of the gold paint on a friend's road bike caught my eye. It seemed worth a shot. It was.

I rode uphill all the way to the school and confiscated the weapon. I know you've been wondering just what it was. Machete? Switchblade? Gravity knife? Nope. It was a tiny folding saw with a 6-inch blade and a bright yellow handle that my dad had given us in case we broke down in the middle of a forest and had to hack it down to get back to civilization, or, if we were feeling truly ambitious, use it to start a whole new civilization. Which seems like a better idea all the time.

My job done, I signed a few autographs kissed a few babies, rescued a treed cat and rode home, delirious with happiness. I was back on a bike.

Sunday, February 24, 2008

Pete's PWP Portraits: An Off and On series


Salvador Dali, Surrealist painter. This is the first in a series of drawings of famous people with Parkinson's Disease. These will appear from time to time as the mood strikes. Why start with Dali? Because he's fun to draw!

Friday, February 22, 2008

Urgent bladder holding on line one


OK, who wants to talk about incontinence? Me neither. Let's come up with a nice, non-threatening euphemism. Doctors often have a strangely poetic way with words,cue the doctor! And the doctor says... "Urgent bladder".

That's much better. It sounds like you're on a dangerous and important mission. Or at least, your bladder is. Unfortunately, this selfish little organ is not the type to stand up well under duress, and when the going gets tough, the bladder gets going.

Several ways of dealing with this little bully come to mind:

1.) Not drinking Advantages: Nothing in, nothing out. Disadvantages: Dry mouth, dehydration, premature death
2.) Adult diapers Advantages: Relive your childhood. Disadvantages: Humiliation, self-loathing, reliving your childhood.

Great. What we really need here is another option. Fortunately I just happen to have one. Voila!

3.) Kegels

Those of you who were paying attention in childbirth class might remember these. Kegels are taught to expectant mothers to strengthen muscles that are stretched during delivery. While flipping through a promotional pamphlet from On Health, I noticed that they recommend this exercise for both Women and men to control urinary problems. Those of you who paid attention in childbirth class can stop reading now. For the rest of you...

Here is how to Kegel, adapted from wikiHow

Locate pelvic muscles. You can do this by stopping the flow of urine when you are going to the bathroom. Then start it again. These are your pelvic muscles. Do this only to find the muscles. It's not healthy to stop and start urinating.

Tighten and relax these muscles daily. Try and work up to 100-200 times a day. Or choose a certain thing to associate with them - for instance, kegel at every red light you come to, or every time you open the fridge.

* Get into a comfortable position. You can do these exercises sitting in a chair or lying on the floor. Relax buttock and tummy.
* Imagine you are trying to hold back urine; lift and squeeze from the inside. Try and hold that action for the count of three.
* Imagine that you are trying to stop yourself from passing wind; lift and squeeze your anus and hold for a count of three.
* Combine those two movements into one fluid movement. Starting from the front, lift and squeeze, don't let go, follow through to your anus, lift and squeeze. Relax. Hold this position for 10 seconds.
* Rest for 10 - 20 seconds and repeat.
* Work towards 12 strong holds and as it starts to become easier, try holding for longer, and repeat as many times as you can.

Next post: Aerobic Kegeling!

Thursday, February 14, 2008

The greatest PD love story ever told


(Above, Abelard notices a twitch in his finger as he prepares to dispatch a valentine to Heloise)

I know what you thought when you woke up this morning: "Hey! Valentine's day! That means romance and Parkinson's Disease!"

You didn't? Well, you will from now on. Because one of the great romances of all time was conducted in the 12th Century between Abelard and Heloise. Abelard is believed to have had PD.

Of course there was no way to diagnose him, and PD was not even identified as a disease way back then. But having a disease that wasn't even "invented" yet was just one more trail for him to blaze. Abelard was always way ahead of his time- A Renaissance man living in the Middle ages.

Here is a good look at his life and accomplishments.

Abelard was a formidable wit, a teacher, a theologian, a musician, and as a debater, reputed to never lose an argument. He is held today as likely the foremost logician of the Middle ages and was a champion of reason.

But when it came to love he was so logical that when he was smitten by the brilliant and beautiful Heloise, he engineered a job as her teacher, and was castrated by her uncle's goons when the whole sorry mess hit the tabloids,

Heloise went off to a convent and Abelard spent the rest of his life getting in and out of trouble with the Church. Among his pupils were kings and three popes.

The two were to carry on one of the most famous exchange of love letters of all time, setting a standard for doomed lovers equaled perhaps only by those hormone-addled (and fictitious) teens, Romeo and Juliette.

Sure, many a man has lost his heart to the woman of his dreams, but answer honestly guys, how many would toss in their testicles, too?

Monday, February 11, 2008

Anybody seen my comfort zone? (part two)

Shortly after my initial diagnosis I got a visit from an old friend. A person of warmth and intelligence, he is someone whose judgment I trust. He predicted a fruitful, if difficult time, based on experience with others who had faced severe illness. I appreciated the comfort offered, but deep down, and for that matter, from right below the surface, I filed this under "Yeah, right."

Six years down the road my friend is looking damn clairvoyant. Since my diagnosis, I have been surfing my strongest creative roll, period.

But first, I had to slam into a wall. Discomfort in a literal sense began to hedge me in. Repetitive strain problems that I have no doubt were Parkinson's driven arrived at the point where my resourceful and bright ergonomics doctor ran out of ideas that would keep me drawing.,

This was a double blow, first because drawing has been a large part of my self identity since I was a second-grader. And second, it has been my living for 25 years. I wasn't ready to give it up to PD.

I had one last reed to grasp. At work we are badgered to sit in an ergonomically correct way- something that I slid by as the rare bird who didn't sit at a keyboard. I knew that there were electronic drawing pads that would enable me to approximate this platonic ideal of posture while drawing. Using the pad, I can keep my elbows in a natural comfortable angle while holding my head level to look a computer screen, where drawings unfold in a way that is magical.

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

Drawing while watching the screen instead of your hands is no big trick. When you take classes, you are taught to draw while looking elsewhere. Mastering the program that allows you to draw on the screen (I use Photoshop) was a different story. 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 dearly bought goal, that ultimate moment when I finally was able to reproduce the old style, I was rewarded with a moment of clarity. I realized that recreating my old look was 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?

Since then I have been on a full-scale creative bender, exploiting the color, texture and effects that the computer makes possible. In the past year I have even been able to add in sound and motion, thanks to the animation program, flash. To see for yourself, take a look at the animation posted below.

The world is accelerating while my body is braking. But at least my drawings can move. video