17 Year Search for Credible Hope

My latest blog post for the Northwest Parkinson's Foundation is about credible hope. You can find it here or at least, I hope you can!

ENDPAIN Interview: The Weirdness of Parkinson's Disease

The formidable Julia O'Malley interviewed me for the Los Angeles based media site Endpain. The interview came out almost too well. Elegant design, superb photos, and penetrating questions from Julia  make my replies seem almost coherent, and thoughtful.  You may judge for yourself here.

"My Degeneration" My book About Coping With Parkinson's Disease is Now Available

My advance copy of "My Degeneration"

Finally, after what seems like, and actually was years in the making, The Penn State University Press has released my "graphic narrative" of what it's like to be forced to deal with Young-Onset Parkinson's Disease. What's more, you can order it at a sale price right now. I hope that this book will be a comfort and inspiration to my fellow people with Parkinson's. And I hope it will be a provocation to consider how best to respond to this indefatigable disease that affects all parts of life as well.

So please read it and let me know what you think. Otherwise I'll be forced to rely on the words of people like Bill Bell, co-founder of the Northwest Parkinson’s Foundation, who was kind enough to write “Peter Dunlap-Shohl once again brings his unique art to the table to help educate, illustrate, and demonstrate life, hope, and strength on his journey with Parkinson’s. Creative and insightful, this book reflects all of Pete’s greatest qualities, including his constant work to help and educate all those in the PD community, patients and care partners alike.” Or Tom Kizzia, Author of the riveting "Pilgrim's Wilderness" who had this to say “The world made fresh by a Parkinson’s patient with a wonderfully sensitive and cocked eye. He tells the tale of his fast-changing reality with compassion and wicked humor, leaping from one crazily inventive work of art to the next. Never more acute than when examining his own mind-set, Peter Dunlap-Shohl leads us from diagnosis and despair to the high ground where he could compose this lucid, moving book. A miracle, in a way—and a triumph.” Heck, you could read this book for the blurbs alone!

As far as I can tell, this is the only book of its kind on Parkinson's available in the known universe. Here is a sample page from the second chapter "Learning to speak Parkinson's "

"My Degeneration" a Memoir About Living With Young-Onset Parkinson's Disease

After four years of wandering in the desert, burnt by the Sun, frozen by night, chapped from the wind, infested with sand flies, dazed with heatstroke, faint with hunger, dejected, rejected, demoralized, but nevertheless, oddly optimistic, I seem to have landed a publisher for my graphic-novel style account of my confrontation with young-onset Parkinson's Disease.

The hope is that many who would be intimidated or otherwise disinclined to learn about Parkinson's will find this an alternate way into this complex and destructive disease. I especially wish this to be a comfort to the newly diagnosed, something that can offer credible hope. The initial manuscript has undergone massive renovation to fit comfortably in a series of books that Penn State Press is undertaking on medical comics, created by patients, doctors, nurses etc. on the sensible theory that comics offer a powerful lens to examine the relationships between doctors, patients, disease and how it all plays out in the larger context of community and society.

The plan is to bring out the book, entitled "My Degeneration", this coming fall. Here are a couple of pages. The first is from a section on Parkinson's terminology, the second is from a description of Deep Brain Stimulation, a surgical intervention for Parkinson's Disease as well as several other neurological disorders.

Scalpel... sponge... white out...

Here is the kind of thing I am delighted to have lived long enough to say, the sort of thing that would have read as nonsense a few short years ago. Frankly, it still looks a little weird when I type it. But here it is: Last Friday, during brain surgery to provide relief from Parkinson's Disease, cartoonist Richard Thompson drew a picture of his brain. (You may see his drawing by going here, and scrolling down.) Naturally, you have many questions about this. As a cartoonist who has undergone this same procedure, I'm here to help. First question?

Q: My God! He drew this WHILE the team had his skull open and his brain exposed????
A: Correct. When the doctors are trying to find the ideal placement of the electrodes in the brain, it is necessary to see how the patient responds to the electric stimulation from the wire, and where the wire is in the brain. Different electrode locations, varying by millimeters, can produce markedly different outcomes. Based in part on the real-time reactions of the patient, they will tweak it to the optimum possible.  So, for this phase of the operation they wake the patient up to assess how they are doing. Richard and his doctors were probably trying out a placement or setting to see how well it worked for drawing. What better way to do this than by actually drawing?
Q: Wait, doctors were putting electrodes in his brain?
A: Yes. The operation is called Deep Brain Stimulation (DBS). For reasons that are poorly understood, many symptoms of Parkinson's Disease can be fairly well controlled in some patients by "stimulation"- zapping certain regions of the brain constantly with mild electric shocks.
Q: Ouch! Doesn't that hurt?
A: No. While the scalp area is plenty sensitive, the brain has no nerves within it that detect pain. Pain is your body's way of telling you that you have a problem that needs addressing. It's like the robot in the old TV show exclaiming "Danger, Will Robinson!" Unfortunately, if something dangerous has made it through your skin, your skull, and past the Blood-brain barrier, you are most likely FUBAR, and pain is useless. So the brain does without it.
Q: Cartoonists have brains?
A: Security, eject that man.
Q: So why did Richard draw a brain?
A: Likely because brains, in all their squiggly moistness, are fun to draw.
Q: This is amazing, and sort of cool.
A: No kidding!
Q: Does this mean that Richard will be able to produce his wonderful loose and confidently masterful drawings and paintings again?
A: I believe so, but it depends to some degree on his tolerance for frustration. The apparatus installed by the doctors must be adjusted to Richard's particular case. His anatomy, the progression of the disease and the way it manifests itself must all be taken into account as the device is tweaked.  This can take months of trial and error, during which symptom control will likely be less dependable than it will eventually become. Fortunately for Richard, he lives near Washington DC, and there are many highly-trained  medical professionals around. But with countless possible settings. finding the perfect mix will take time.

And DBS is not a cure. Parkinson's will always lurk in the background, subdued, but not banished. From time to time it will leap out from the weeds and send his stroke askew. This can be dreadfully demoralizing, especially for a perfectionist like Richard. It can mean doing things again and again to capture the look you want. 

Creativity is all about overcoming limits. Parkinson's is all about imposing limits. My money is on Richard's creativity. I can't wait to see what comes next.

Back from the undead

It happened again just last Friday. We were at an opening for a show of collaborative drawings and paintings by my friends Joe and Catherine Senungetuk. I hadn't seen either in quite a long time. Catherine noticed a difference "You look so much better!" She exclaimed. It was not the first time I'd heard this since the operation, but I especially took this instance to heart. Catherine is trained as both a nurse and an artist. When she says I look better, chances are I do.

She struggled to put her finger on what the actual improvement was. Everything from my color to my affect came up. Attempting to sum things up, I offered the description "More... lifelike?"

Catherine guffawed, and we moved on to other topics.

But there have been many similar observations. My dental hygienist was delighted with the new me, "You actually smiled!" She reported as I settled into the chair. And my neurologist offered the supreme compliment "I haven't seen you looking this good in years." All of which is music to my ears of course, except for one disturbing implication.

After a while the repetition of these words of encouragement from so many different people brought me to an inevitable conclusion: I must have looked like crap before the operation.

Curious and apprehensive I put the question to my family. Wiley was quick to offer helpful info. "You looked like this, Dad" he said, curling his shoulders forward in a slump. His arms hung limp and still in front of his trunk. "Like a zombie" he added.

We had a brief argument about exactly what a zombie looks like, but there was no escaping the larger point. It can't be good to look like anbody's idea of a zombie.

Sad truth, as a Parkinsonian, you're not even going to be a good zombie.

CUT TO: Townspeople barricaded in home. Our hero, John Strong parts a drawn curtain and squints through

Strong: "They... they are coming."

Joey, 13-year-old neighbor: "What do we do? what do we do???"

Strong: "Well, the ones that aren't frozen in place are shuffling incredibly slowly and falling down. Let's heat up some dinner, then catch a nap, and then think about fleeing."

I can hear the test-audiences nodding off and snoring as I write. So I'm glad to be a former zombie. But to all of you who stood quietly by me while I went through my b-movie monster phase, thanks for putting up with me, and believe this: You'll always look great to me.

In case you think you've seen everything....

...you haven't. Unless you've watched this video of a man playing his banjo during his Deep Brain Stimulation surgery. Sadly, he was not cured of his banjo habit. There was also a tense moment when a nurse and the anesthesiologist absentmindedly began clog dancing while the surgeon chanted

"Swing your partner, Doe-si-doe! To the brain's deep part we go! It's not far, no country mile, drill that burr-hole mountain style!"

Disaster was averted when they found the patient could not perform a Buck-and Wing, and everyone was brought back to their senses.

I looked into this extensively, and can reassure everyone that playing the banjo has not been added to the battery of tests that a surgical candidate must perform to qualify for DBS. In fact, most teams prefer something soothing, and would appreciate it if patients could render a little light jazz on the pan pipes. Also on the approved list: Bassoons, dulcimers, Irish harps and ocarinas. Needless to say Theramins are forbidden in most operating rooms.

Must run. I need to work on my rendition of "Foggy Mountain Breakdown" arranged for pan pipes.

New Study on Deep Brain Stimulation finds big improvement and some risk

Here is the essence of a new study on DBS just released:

ScienceDaily (Jan. 6, 2009) — Patients with advanced Parkinson disease (PD) who received deep brain stimulation treatment had more improvement in movement skills and quality of life after six months than patients who received other medical therapy, but also had a higher risk of a serious adverse events, according to a new study. (To read the entire story, look here)

This was brought to my attention by Roberta Greenberg, who is part of a DBS team in Southern California. I want to share a comment from her about the results:

"What a stunning statistic….71% improvement in motor symptoms and QOL for DBS patients vs. 32% for medical therapy patients. Those of us on the DBS side have been trying to tell the medical community this for the past decade, but have had no verifiable, quantifiable data to back up these claims….just our anecdotal observations of our own patient populations. But now….the data has arrived. WooHoo!!

The risk profile in the study is much higher than what I’ve seen. I think that’s probably because the study started in 2002 and surgical techniques were much more crude then. In my experience, the incidence of infection, bleeds, etc has been less than 2%. I think that’s the norm now. We’re so much better at it now than we were back in 2002/2003. The dark ages of DBS. I wish they had chronologically compared complications in the study…but like I said, I’m grateful that they finally got the darn thing published!"

One unmentioned benefit: After the procedure, friends will call you "Cyber Boy".

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.

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.)

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.