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.

Sunday, May 3, 2015

Off and On, The Alaska Parkinson's Rag, Named One of the Top Parkison's Blogs for 2015

Once again Healthline, a Web site devoted to increasing patient well-being through the dissemination of  information has chosen Off & On as one of the top  Parkinson's Disease Blogs for the year. And 2015 isn't even half the way over yet! It's the third time in a row that Healthline has bestowed this honor on this raffish little Alaska-generated blog.
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Healthline


Here is their statement about including Off & On: "The blog is an addictive mix of posts that showcase the author’s artistic talents, cutting-edge wit, and easy-to-digest data on the science and medicine surrounding Parkinson’s Disease."

There was no entry submitted, the Web Site apparently searches for blogs and judges which ones best meet their standards. Then they drop you a note about being selected. It's a nice surprise, and an honor.

There is a list along with short descriptions of each of the 14 blogs named to the list   here.

Saturday, May 2, 2015

May Parkinson's Disease Events for Southcentral Aalska

Here it is, May already! This is good news for those without PD because it means that it is no longer Parkinson's Disease awareness month. The rest of the country, indeed, the rest of the world, will be free to go back to being unaware of PD. Lucky them. As this is not an option for those who actually have the disease, you will be happy to know that we will have the following blockbuster opportunities to learn more about this affliction, and how to cope with it.
The Telehealth interactive broadcast presentation will be May 11, 2015 at 1:00 p.m. 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. ) Once there, after a certain amount of blundering with the high-tech equipment, we will have a presentation from Caleb Foss, physical Therapist. Topic: Caring for the Caregiver with physical therapy techniques for reducing the chance to getting hurt while caregiving. Tips on how to lift, transfer and move a person with PD.
Our monthly support group meeting May 16th at 3:30, promises to be a humdinger. There will be three different presentations. We will warm up with two short sessions. The first will be on Medicad help for people who have Parkinson's. The second will be from the Alaska representative of the Parkinson's Action Network, outlining the political environment at the federal level for Parkinson's research. These will be followed by the main act, local movement disorder specialist Dr. Alec Glass. Alec will give a talk touching on the current state of PD research, and things that he is hopeful about in the not-too-distant future for the treatment of Parkinson's. There will be time for questions, so if you want to ask a smart and approachable doctor your PD questions, you will never have a better chance.
And don't forget the Regular Tuesday Yoga for PD sessions every Tuesday, 1:30 PM, at the Anchorage Dance Studio, 550 E. 33rd Ave. Anchorage, 99503. Something new is always being presented, so challenge yourself to a safe & uplifting hour of movement and IN-SPIRATION. You will be glad you came!

Your faithful servant,
Peter

Wednesday, April 22, 2015

PD Awareness Chat- Boiling Down My Answers

Here are the questions, along with most the answers I gave to the Healthline Parkinson's awareness chat today. I cheated and worked out my main answers ahead of time as I am an amateur typist at best, who has PD. It seemed worth doing as they sent the questions beforehand, and I could give better answers if I wasn't editing typos as I went, not to mention saving time. I did respond to some individual questions and remarks live, but the responses are buried in the threaded replies. The whole confusing-yet-informative shooting match is here complete with answers from the other panelists.

Q1 What advice would you give to a newly diagnosed Parkinson’s patient and their family?

A1 First: Don't panic. I remember my diagnosis as feeling it was one of the worst days of my life. Everywhere I looked I was told three things. PD was progressive, incurable and disabling, oh, and a fourth thing. there was nothing I could do about it. But diagnosis is not a death sentence, it's a wake-up call. By the time you are diagnosed, you've probably been coping, mostly unconsciously with PD for more than a decade. You're already a pro! Now that you know what you're up against you can take advantage of what we've learned about how exercise can significantly help your balance, motor abilities, and likely slow progression. Second: learn all you can about Parkinson's disease, knowledge is a critical coping tool. (Plus, Parkinson's is darned interesting. ) And third: beware of depression and apathy, both of these non-motor symptoms of Parkinson's can severely undermine the patient's ability to cope with this complex disease. Depression in PD can usually be dealt with effectively with medication.

Q2 What resources are out there for patients and caregivers? What is the best way to cope with the disease?

A2 There are tons of resources but they vary in availability according to geography. If you live in rural Alaska or on a remote ranch in Wyoming. you're lucky if you even have a solid diagnosis.  If you live in a large city with specialists, medical schools, Parkinson's Support groups, caregiver support groups, dance and exercise programs for PD, congratulations, you are among the parkie elite. For those who are limited by where they are you will have to be more active in creating  your own coping tools, . You and your doctor can certainly work out an exercise plan. The Web is your friend. All the national Parkinson's groups have web sites chock-a-block with free info, pamphlets, DVDs etc... If there is no support group in your community, well, maybe it's up to you to form one. It doesn't have to be complicated or fancy to have an impact. Just seeing other people cope with the disease is therapeutic. As for coping with the disease it's hard for me to overemphasize the role that exercise has played in my kit of coping tools. One of the worst things about diagnosis was the feeling there was nothing you could do. That is certainly no longer true. See the Davis Phinney website for more on exercise. http://www.davisphinneyfoundation.org/

Q3 Peter, since your diagnosis over 10 years ago, you have become a major patient advocate for Parkinson’s, what has driven you to help others affected the disease?

A3 Well, if  by "advocate" you mean "Loudmouth." It's weird, but when I found out I had PD, for one of the few times in my life it was quickly clear to me that certain things had to be done, what at least some of those things were, and that I was in a unique position to do them. Not doing them didn't seem like an option. It started with our local support group which I became in charge of sort of by default, as  the only person with enough spare energy to run the thing. Then came the blog, Off and On. Because I find the combination of words and images we call "comics" a powerful medium for expression and learning, it was natural for me to want to experiment with it. At the time there was no other patient I could find who was doing that, so I figured I was in a unique position to document the experience in a new way,  (Since then there has been at least one other person working on this - Marty Bee in Louisiana) It occurred to me that the erosion of my drawing ability would become apparent to the reader in real time if they followed regularly, they would see PD in my increasingly erratic line.  That happened, to a certain extent, up until my brain surgery, when things snapped back into better focus. 


Q4 Awareness is key to shaping policy around Parkinson’s. Ted, can you provide a little info on PAN and your main initiatives around Parkinson’s policy this year?

Q5 What are some ways patients can stay active and live healthy lives with Parkinson’s?

A5  As noted above: exercise! To remain active, be active. Don't let Parkinson's take anything away from you before you have to give it up. When playing the guitar got too complicated for me, I switched to  the mandolin, fewer notes to keep track of, and new things to learn.Am I a great mandolin player? No, adequate from time to time. But it helps keep me going. And I actually have finally started to make progress in some areas. And stay involved with your community, join a support group, dance group, Yoga group... Isolation is severely debilitating to those of us with PD.

Q6 Are there any misconceptions about Parkinson’s Disease?

A6  Absolutely. For starters PD is not just a disorder of the old.  Parkinson's Disease can occur in any age group, even young children.  PD is not just a disease of the brain, its effects can be found in every cell of the body. PD is more than a motor disorder, It has significant non-motor aspects, such as depression, constipation, bad balance, acting-out of dreams, inability to smell properly and on and on...

Q7 Cathi, you’ve had over 30 years of working as a neuroscience nurse, how has treatment for Parkinson’s Disease changed over the years?

Q8 What research/medical advancements are you most excited for and have the most promise?

Q9 I think there are many opportunities out there for research, the alternate brain pathways to the dopamine paths that are also affected by PD such as the calcium channels, are just now starting to be explored. And what about the white cells of the brain and their effect on PD? Virgin territory. Investigating what is going on in the early years before motor problems set in is important if we want to catch the disease before it begins to mess with our brains. And of course, what are the further possibilities of coping with PD through the use of exercise?

(Bonus, they sent this question about the book as part of what thet would ask, and then didn't ask it. But here it is, along with my answer.

 Want to tell us a little bit about your upcoming book “My Degeneration”?

My Degeneration" is a memoir of coping with PD told entirely through comics. After I had been blogging a few years,  people began to tell me I should do a book. I was reluctant, because A.) Authoring a book is a lot of work B.) I have Parkinson's Disease, which limits my skills and my energy to do work, and C,) There are (in spite of A&B,) tons of books about living with PD out there. I didn't believe I had anything special to contribute. Eventually my friend Steve Aufrecht won me over with this argument, "You treat PD as an adventure." Three years later, Penn State University Press will bring it out in October. I hope that it will give the newly-diagnosed credible hope for many years of enjoyable life in spite of this affliction. There is a good capsule description of the book here )

Tuesday, April 21, 2015

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.

Tuesday, April 14, 2015

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.