Saturday, July 11, 2015

Ask the Wrong Question, Get the Wrong Answer

What is this cartoon doing Here? It was inspired when I  re-read the latest blog post I did for the Northwest Parkinson's Foundation. In a moment of weakness, I used my trusted position as a spokesperson for the millions suffering from a dread disease for a little unseemly gloating. Gloating over the fact that I remain upright in year 14 of the 15 years my diagnosing neurologist finally coughed up as an answer to the question "How long before I am totally incapacitated?"

On reflection I realize  the question of how long I had to remain my vibrant, energetic, life-loving self was a stupid one. Understandable, but stupid.

As the cliche says, we all have our own case of Parkinson's. We each have our own particular and mysterious response to the disease as well. I once asked Neurologist Monique Giroux why some people responded to their diagnosis with urgent attempts to mediate its impact while others seem to have no stomach for this. She figuratively threw up her hands. How can anyone guess how a person will respond? Could you predict your own response to diagnosis?

The guesswork goes on from there. Could you predict the surprising, but haphazard progress of Parkinson's research? How about its simultaneous agonizing slowness? Can you prophecy whether your body can handle a new medication without troubling side effects? Can you say beforehand that your psyche can withstand the burden of dealing every day with an indefatigable disease? A disease that is the first thing you think of when waking, and the last thing you think of when nodding off at night? A disease that is only now coming to be diagnosable through means other than an informed opinion?

How could the neurologist know then that the surgical installation of some cutting-edge electronics in my brain six years down the road would modify my symptoms significantly? Now that it has actually happened, I can scarcely believe it myself. Even if the benefits of exercise for PD patients were well-documented and established knowledge at the time we had our first meeting, how could he predict whether I would undertake the amount of exercise that I do in hopes of modifying the progression of my case of PD?  And how do we sort out the possibility that I have a particularly mild case out from the results of that exercise?

The more you think about it, the more impossible an answer seems. Pile on the everyday vagaries of life, traffic accidents, heart attacks, household accidents, grizzly bear maulings, pianos dropping out of the sky, and it's a wonder any of us are still here.

Besides it's the wrong question, anyway. The real question is not "how much time do you have?" but "How do you spend the time you've got?" Only a Parkinson's god could answer the first question. Only you can answer the second.

Link to a new post for the NWPF, "The Uncooperative Patient"

The Northwest Parkinson's Foundation posted the latest in a string of commentaries they commissioned from me here. This particular post departs from my typical bemused earnestness to indulge some cautious, carefully moderated gloating.

Thursday, July 2, 2015

July Parkinson's Update For Anchorage Area: The Hidden PD Agenda Revealed!

Sources who wish to remain anonymous whispered the following to reporters who wish to remain anonymous. Authorities high in local Parkinson's Disease circles confirmed there will be a telehealth broadcast Telehealth July 13, 1:00p.m. Dr. Jason Aldred, Neurologist and Movement Disorder Specialist will tell us about integrating TeleMedicine into healthcare for Parkinson’s Community members in communities without direct access to PD Specialists – including current TeleMedicine research projects being done within their practice.To find the Alaska meeting proceed with all deliberate speed to Providence Hospital oncology wing on Piper St. ( Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. Tell them Peter sent you and give the secret handshake. You remember the secret handshake, right? Just let your hand shake, and you will be admitted)
The regular support group meeting will be  at 3:30 on the 18th of July at the Pioneer Home. We will have two presentations, first a short warm-up presentation on medicare, then a presentation on care giving from long-time support group volunteer Betty Berry.
See you there, do not be followed.

Tuesday, June 2, 2015

June Parkinson's affairs for Anchorage and Environs

Well here it is June, what are we going to do about it? As usual, we will have a telehea... What? We won't? Whoa. For the first time in living memory, we will NOT have a telehealth meeting this month. The speaker had to reschedule, and they didn't have a plan "b" or indeed, a backup plan of any other letter. So you will have to devise your own plan "b" for the second Monday in June. I take full responsibility for this, even though it's NOT MY FAULT! It makes me look mature to take the blame, and you are all too nice to seek revenge. Right? Right.
So, moving right along, the meeting for June will be our customary Summer  potluck, June 20th. This will occur at the traditional time, 3:30, but not at the Pioneer Home! Instead it will take place at my house, 9601 Elmore Road.  How do you get there? Call me at 350-9691for directions.  As far as food, I will concoct something main dish-like, and provide paper plates and utensils. You bring whatever you like that is healthy and delicious, or at least delicious.
See y'all the 20th!
Your dear leader,

Friday, May 22, 2015

Link to New Post for the NWPF: Reflections on Care Givers

Caregivers: the gossamer thread that any of us, at any time, may come to hang by. Reflections on those who choose to share the burden with those who must. A new post for the Northwest Parkinson's Foundation.

Tuesday, May 19, 2015

"My Degeneration" Festinates a Step Closer to Publication

OK, show of hands, what is the difference between the two pages below, excerpted from the manuscript of my forthcoming book about living with young-onset Parkinson's Disease?        

The top is the way the page looked when I thought it was finished. The bottom is the way the page looks after encountering orthographic ninja Laura Reed-Morrisson, copy editor for Penn State University Press.

Laura lopped an apostrophe off the slang contraction "Didja" (Second panel) and plucked the extra "L" from "Skillful"  (Bottom of page). So, big deal, I made a couple small errors. What's the point? This: those little errors can quickly add up in the reader's mind to doubt about the author's credibility. As the little mistakes pile on, you eventually reach the dreaded tipping point, where the reader decides that if you are incapable of writing simple English, you certainly are not mentally equipped to plumb the murky depths and infernal complexities of neurology.

Laura found similar little errors on at least 25 pages of the manuscript. That's 25 pages I had been over countless times, looking for these kinds of problems. And it was more than just usage or spelling questions. She also caught continuity problems in the drawings (a sequence in which I left a tone out of a drawing resulting in prematurely gray hair for three panels, after which it mysteriously reverted to  my normal reddish-brown,) and a misquote of Henry David Thoreau, as well,  (it's "I have travelled a good deal in Concord," not "I have travelled extensively in Concord.") And if you are worried about the spelling of "travelled" with two of the letter "l," relax. Laura found precedent in editions of Thoreau out of both Yale and Cambridge.

Just to spice things up, my copy of Photoshop became mildly hysterical, and decided I could not save documents under the same name name once they had been edited. It would protest "Cannot save. This document was left open or is being used by another program" when the file in question clearly was not in play. So I was forced to save the document under a different name, then go to the directory where the file was, and change it back to the original name. Some of the changes did not  survive this cumbersome process and had to be redone. To complicate things further, our page numbers were skewed by one page due to the addition of a table of contents late in the game, Laura was working with the table of contents as page one, while my page one was the first page of the actual story. So I would have to correct the numbers as we went. This is a recipe for disaster, or at least feelings of rage and frustration.

Laura never cracked. Her emails were invariably clear, good-humored, polite and exquisitely patient. The book will be substantially more... substantial, thanks to her sharp eyes and disciplined brain. If I sound a little awe-struck, it's only because I am.

Wednesday, May 13, 2015

"The Bad Doctor," a Graphic Medicine Prescription for Patients and Doctors

What is graphic medicine? It's the broad term for those works (this blog, for instance) that take on issues associated with illness, treatment, wellness, the health care system, and their place in community and the wider world, through the visual language of comics. The idea is that comics can be a powerful medium to open beneficial lines of communication between patients and medical service providers. They may also help clarify our thinking about tough subjects such as end-of-life care, or fairness in the distribution of care and resources. Comics can be potent in their ability to distill and pass on complex ideas and intense emotions. If you don't believe me, you haven't read "Maus," by Art Spiegelman.

Penn State Press is undertaking an effort to publish a series of books both about, and of the Graphic Medicine genre, on the theory that it "articulates a complex and powerful analysis of illness, medicine,  and disability and a rethinking of the of the boundaries of "health'" (Full disclosure, the Penn State publications will include my book "My Degeneration" about dealing with young-onset Parkinson's Disease.)

The first two books in the Penn State series have just been published. They are "Graphic Medicine Manifesto" written by editors of the series, and "The Bad Doctor" a graphic novel about a middle aged doctor who practices in the British countryside. It was written by Dr. Ian Williams, one of the editors of the series. I've read "The Bad Doctor," and can answer the question of whether it makes the case for the merits of this genre with a clear "yes."

One advantage of comics is the form's ability to compress information. In just over 200 pages "The Bad Doctor" lets us look over the shoulder of its central character, Dr Iwan James, as he encounters an assortment of patients ranging far and wide on the spectrum of "normal."  We also get close-ups of number of James' colleagues, who emerge as people remarkably like the rest of us. They struggle with romantic problems. They have personality flaws and philosophical conflicts about how to run their practice. They have moments of strength and weakness, idealism and avarice.

Nobody embodies these conflicts more than Dr. James. While on duty with patients, He exhibits a calm and caring competence. Underneath there is tension. He is attracted to one of his partners, and at odds with another one, who is opportunistic and lazy. Not that Dr. James is above researching bicycles on the internet when he should be attending to clinic business. Furthermore, we learn from a series of dreamily-rendered flashbacks, he still is still troubled by the intrusions of a case of obsessive-compulsive complex. We see Dr. James'  baseless fear that he may harm one of his patients subtly reflected in the fear of an obsessive-compulsive man he treats who is tormented by thoughts he will damage his beloved nephews.

Dr. James is no Dr. Kildare, able to pull miracles from his pocket. James' pocket is more likely to produce lint.

So what is the lesson here?

When I first began to attend support group meetings for people with Parkinson's Disease, I was surprised at the amount of time the group spent airing anger at the doctors who were supposed to be our allies in our efforts to cope with the disease. Often these feelings were based on callous remarks or moments of utter cluelessness that these Doctors inflicted on their patients. These moments of casual destructiveness were made all the worse by our expectations of doctors, that they are demigods, learned, deft healers, immaculately trained and disciplined, yet wise and caring.

Well, bang goes that illusion. And really, good riddance. Thanks to "The Bad Doctor" we may see doctors as limited like the rest of us. Once we no longer imagine them as high priests of healing endowed with holy infallibility, two things happen. First we can see our doctors as human, struggling to do the best they can with the tools at hand. This will enable a more realistic expectation of what is possible, and a gentler sense of disappointment when these (mostly) good people fall short of the perfection we sometimes count on.

Second, with the recognition of doctor's limits, it becomes all the more important that the patient accept more responsibility for managing their care. Patients need to learn what they can about their affliction, and to be alert to factors or phenomena that their doctor may have overlooked or not been aware of. The new paradigm is for partnership between doctor and patient to treat disease.

"The Bad Doctor" acts like a vaccine against the notion that we can delegate responsibility for our health to anyone else. We must find the best-trained, most capable medical care we can, and then to work with them to achieve the most satisfactory result. We must be realistic about what doctors can do. That's not a bad thing. It's a recognition of reality.

There certainly are miraculous things accomplished today by the people who wield the tools of modern medicine. None is more miraculous than the important fact at the core of "The Bad Doctor": these mighty feats are performed by people not so different from you or me.

Wednesday, May 6, 2015

The Parkinson's Rag Rag

Recent news that, for the third time in a row, this blog had been recognized as one of the top 14 blogs about Parkinson's Disease seemed cause for celebration. So, sparing no expense, I commissioned myself to do a t-shirt. (Of course I got the crony discount, that's the way the world goes 'round.) A reasonable facsimile of the end result appears above, It comes in a wide variety of sizes and colors. You'll want one for the entire family, but I suggest buying each member their own, as quarrels over whose day it is to wear the shirt are sure to ensue if you only buy one. They cost $24.98, and you can order yours here.