Reminder: Facebook chat about Parkinson's Disease

I 'll help moderate a Parkinson' Disease Facebook chat tomorrow, April 22. It's sponsored by the Web site Healthline. There is more info here.

Parkinson's Awareness Facebook Chat April 22

What is a Parkinson's awareness facebook chat? I don't know, but I guess I'll find out when I participate in this one as an "expert" moderator. How did I qualify for that? Like many Parkinson's matters (what causes PD? How exactly does DBS work? What is the wing beat of an unladen swallow with Parkinson's Disease?) we, the experts, aren't quite sure. But my policy when someone offers me the chance to do something new is to at least try it if it seems remotely possible. So when the Website Healthline (full disclosure: Healthline has twice picked this very blog as one of the best PD blogs, Universe-wide) asked me to be a moderating "expert" I swallowed hard (hey, I've got PD, whenever I swallow, it's hard,) and said "yes."

Here is a description from Healthline of the upcoming event "In honor of Parkinson's Awareness month, we will discuss with experts how to cope with Parkinson's disease and the future of Parkinson's care. We'll hear from medical professionals specializing in Parkinson's Disease and patients to understand their perspective of the disease. Join us Wednesday April 22nd for the conversation!"

If you want to try something new, you can sign up to participate here. You'll find biographies of the expert moderators on the linked page, and a place to give your email address for instructions on how to join in and an alert to remind you of the whole shebang. Part of the answer to the question posed above is the chat will be whatever we make of it. You can make it better by joining in.

Stalemate

Penn State Catalog lists "My Degeneration." Also BLURBS!

It appears that the people at Penn State Press are convinced that "My Degeneration" will be published in October. They say so right in their catalog, which also has a short description of the book and five of the finest blurbs ever written. The catalog offers a few different ways to pre-order the book, which you will be desperate to do after reading the blurbs, but the only thing I could get to work was the one that enables an email notification when the book is available. Watch this space for further exciting developments as they break!

It would be a disservice to the fine writers who agreed to read a draft of the book and then had nice things to say about it to not repeat their remarks as often as I get the chance. They appear below, for your interest and with my thanks.

“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.” —Bill Bell, co-founder of the Northwest Parkinson’s Foundation

“Peter Dunlap-Shohl is a comic genius and a masterful artist. The fact that he came down with early-onset Parkinson’s Disease gave him the unlucky opportunity to chronicle this dogged and humorless disease. His wit and artistry, his truth telling in the face of struggle, I know, makes the struggle easier for his readers to bear. Peter is a Rock Star Artist and Humorist. Every disease like Parkinson’s should have someone like Peter Dunlap-Shohl, until there are no more diseases like Parkinson’s left.” —John Straley, author of Cold Storage, Alaska

“I could have recommended Peter Dunlap-Shohl’s book because it brings attention to a great purpose. Or because it is brave and honest work. Or even simply to acknowledge an achievement of this magnitude created under physical, psychological, and emotional circumstances that most of us will never understand.

"But I'm not endorsing Peter’s graphic novel for any of those reasons. I'm doing so because this is a damn fine work of art, by a damn fine artist.” —Nick Galifianakis, Washington Post cartoonist

“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.” —Tom Kizzia, author of Pilgrim’s Wilderness: A True Story of Faith and Madness on the Alaska Frontier

Of Course You Can Judge a Book by Looking at the Cover. Go Ahead, Judge Mine

 

  

One of the lamest sayings is "You can't judge a book by its cover". It is the job of a well-designed cover to convey a sense of why the reader should take an interest in what the book has to say.  The cover has to give us a reason to spend our precious time (and money) with this particular book. If a book doesn't deliver on the promise of the cover, it will have indicted itself as untrustworthy, a self-inflicted wound at the core of any author's most essential attribute, their credibility. 

In a sense, if a cover is badly designed, it could and often does actually function well. It's warning us the author doesn't care enough or isn't wise enough to present his work credibly. That is a strong signal that the book itself will be less than worthwhile. Good job, amateurish cover designers, and thanks for sparing us the effort of slogging through your badly-organized and poorly thought-through material. 

Above is the cover for my book, due this Fall, about coping with young-onset Parkinson's Disease.  The publisher, Penn State Press has chosen an image and presented it in a way that is compelling, and gives you an idea of what to expect from the work. You will be up close and personal with the effects of the disease. Choosing this image and setting it against the simple background tells you we are serious. In combination with the title, with its layered pop music reference, it conveys the hope that there will be wit as well. 

Does the content stand up to the promise? I invite you to see for yourself this Fall.  

Life in Slow-Mo, Small talk

Diagnosis, A Disaster, or a Turning Point?

Note: This piece originally appeared as one of my contributions to the Northwest Parkinson's Foundation Community Blog, here. I plan to repost some of the best work I do for them at Off & On from time to time. (The illustration was inspired by Harry Truman's remark that having the Presidency suddenly thrust on him felt like "The Moon, the stars and all the planets had fallen on me" Which comes pretty close to describing the feeling I had when I was diagnosed.

“You have Parkinson’s Disease.” There is no good way of getting this news. Even as the words enter your world they seem to rearrange it irrevocably and permanently for the worse. How can life be the same once the words “Parkinson’s Disease” attach themselves to you?  A chorus of emotions crescendo. You grieve your old life and dread the bleak future you are informed is inevitable.

The current state of the art technology allows neurologists to identify Parkinson’s Disease only after it has been at work on us for years. Researchers now know it lurks in our guts and slowly erodes our sense of smell for perhaps a decade before the tremors, stiffness and slowness considered the hallmarks of the disease become apparent and diagnosable. Even more disturbing, these symptoms only appear after 60 to 80% of the cells in the part of our brain that make the dopamine that signals our muscles to move are out of commission.

This puts the day of diagnosis in a different context. It’s difficult to not think of diagnosis as coinciding with the start of your disease, as the point your troubles began. But since diagnosis only comes with the onset of identifiable symptoms, symptoms that only appear after significant damage has already been done, diagnosis is not the disaster it seems. Instead, it’s a wake-up call. Disaster would be hitting the snooze button.

The disease that threatens your future has already been shaping your past. But now you are aware. What you say good-bye to with diagnosis is not your health - that was under assault years ago. What you really bid farewell with diagnosis is ignorance. And while ignorance is bliss, knowledge is power. Which of these two is more useful to you right now?

In the days when there wasn’t much you could do about Parkinson’s Disease, you could make a shaky case for blissful ignorance. It’s much harder now, when early interventions have been shown to increase your quality of life. We have knowledge and tools available to improve our ability to make better lives for ourselves that weren’t available just ten years ago. We now know much more about the major role that exercise plays in moderating symptoms and possibly modifying disease progression. We now have the surgical intervention of Deep Brain Stimulation. There is a raft of new approaches on the horizon, like medicines that work outside the brain’s dopamine pathways and even a possible PD vaccine.

Whatever value present or future interventions hold, you can’t take advantage of them unless you know you need them. Ignorance is looking less like bliss and more like misery. Stupid and blissful is at least a little tempting. Stupid and miserable has no allure at all.

The discussion can’t take place until you are diagnosed. So maybe your diagnosis day wasn’t one of the worst in your life, the day your future jumped the rails, the day the moon and stars fell on your head. Maybe it was the day you began to pry them off. That’s a pretty good day

It's another Post for the Northwest PD Foundation

In which I get in touch with my inner Pangloss,  a must-read, Along with an information graphic!

"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.

Parkinsonian Facial Masking Jumps the Language Barrier

Many years ago, I drew this cartoon

Over the years I have had many requests to reprint, or repost this drawing, which I am usually happy to grant (yes it's a power trip.)  And I appreciate the effort these people go through to track down an obscure cartoonist who lives far, far away. But I have a new BFF, Leszek Dobrowolski from Poland. Leszek not only tracked me down from another hemisphere, but across a formidable language barrier as well. In fluent English, Leszek graciously asked permission to reprint a Polish-language version of the above cartoon (The translation appears below). Parkinson's Disease, uniting the World.