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.

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.

Saturday, April 11, 2015

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.”
“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.”
“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.”
“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.”

Tuesday, April 7, 2015

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.  

Wednesday, March 18, 2015

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

Thursday, February 26, 2015

"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.