Saturday, November 28, 2015

Review Round-Up, What Critcs say about "My Degeneration" (Updated 4/9)

Here is a brief collection of snippets from the reviews that I have seen so far of my new memoir, "My Degeneration"

In a piece that appeared in The Alaska Dispatch News Sunday magazine,
Nancy Lord, former Writer Laureate of Alaska called "My Degeneration "an astounding work in the form of a graphic narrative that documents — in a formidable blend of intellect, emotion and humor — the experience of living with Parkinson’s."

Mike Dunham, veteran arts reporter for of The Alaska Dispatch News set the tone early, writing "Informative, poignant, funny and deeply engrossing, the 96-page full-color book is the most entertaining volume by an Alaskan author to cross my desk in some time."

"Publisher's Weekly"weighed in soon after with this: "Editorial cartoonist Dunlap-Shohl (formerly of Anchorage Daily News) takes a frank look at his battle to live with the specter of Parkinson's disease in this emotionally resonant memoir"

Next, in a surprise move, Science called it "a model of how to fill a particular niche" in a double review with another book from Penn State's "Graphic Medicine" series, Aneurin Wright's "Things to Do in a Retirement Home Trailer Park When You're Twenty nine and Unemployed."

Reviewers on Amazon have been exceedingly kind. Out of 14 reviews so far, all (even the one from my cousin Jon) have awarded "My  Degeneration" five out of five stars. Comments from Amazon reviewers include :

***** "It must become one of the first things a physician gives a newly diagnosed patient to read. It's that good."

***** "This book blew me away."

***** "It is devastating yet fascinating. A must read."

***** "This is a beautiful book"

***** "I will keep this book in my office and read it and re-read it as well as recommend it to everyone I know."

***** "It is impossible to over-praise this book's importance in placing this despicable disease in context and/or for it's clarity of explanatory information

***** "I think we would have to go back to Oliver Sacks' "Awakenings" to find an investigation of PD with similar investigative prowess and narrative power."

In a starred review, Library Journal really liked the art (I think) "His deliberately scrabbly brown/green art—now done on computer, owing to motor control issues—fittingly captures his ten years of PD–invaded life as well as his wildly imaginative visions of punching out a personified Parkinson’s, visits from a “spandex angel” who preaches physical fitness, and how coping with PD is akin to fighting Moby Dick.   

The Brooklyn Rail reviewed  the book as part of a package with other volumes in the Penn State Press Graphic Medicine series. Reviewer Taney Roniger remarked " In My Degeneration, ... Peter Dunlap-Shohl’s beautifully moving account of his journey through Parkinson’s, the disease’s harrowing and often bizarre symptoms are rendered with such warmth and wit that the reader stays intimately engaged."

Foreword Reviews  had the following take "My Degeneration opens up a powerful new purpose for comics—as an effective tool to educate doctors, patients, and others about both the clinical and the personal sides of living with a disease. This book should be required reading for any specialist.” " 


Friday, November 20, 2015

Fine-Tune Your Meds and Dosages With This Handy Chart

First, this CYA notice: please confer with your doctor before adjusting your meds. You'll be glad you did.

Most of us (but by no means all) adapt well to levedopa or other medications  in the earlier stages after diagnosis. Then as time passes we find that we must fine-tune our timing to avoid motor fluctuations (off and on periods, dyskinesia, etc.) Graphing our dosages and timing is a good way to keep track. So I have drawn up a chart to make things easier. You're welcome. There is a pdf of the blank chart here for your downloading pleasure. When you download and print the chart, it should look like this
Here is how to use it. Starting with the bottom line fill in and number all your medications, not just your PD meds. Your chart will look something close to the one below...

If you need more space to add medications, I suggest putting them in above the existing blanks I have provided. Note that I have added the strength of each medication as well as the medication's name to make it easier for your doctor to interpret results when you confer with them (See CYA notice above.) Once you have the medication blanks filled in, you are ready to get graphing! But you'll be best off if you start with your morning cycle, so if it's not time for the first dose of the day, you should start tomorrow. I have found that to keep my meds straight it works best for to start my medication cycle at the same time each day. This eliminates one variable, and the fewer the variables, the easier it is to see what is happening. A pill timer is a big help, or set up a schedule of dosage alarms on your smart phone's clock app. Let's say your cycle starts every day at 7:00 am.  Your first entry will look  something like the chart below...

List your meds by number as you take them throughout the day. As the day goes by, also track your motor state ranging up and down from "off", (difficulty in moving and lots of tremor) through acceptable, (Approximating normal life) up to excessive motion with uncontrolled dyskinesia. Whenever you notice your state changing, note it down with a fever line on the graph. (The wavy line shown here in gray) By the end of the day, it will look something like this...

In the In the above example the person takes medications 1,2,3, and 4 first thing in the morning,and then every two hours, takes medication one.

Below is another example of how the chart may look

 So what is going on? That's for you and your doctor to figure out (see CYA notice at the top of this post.) But just for grins, let's look at these last two charts above again. In the next-to-last chart we find the patient spends much of the day with too much unwanted motion suggesting the levedopa (Stalevo, in this case) dosage could be spaced out in time more, In the last chart, we see rather frequent periods whered the patient seems undermedicated, suggesting a boost in dosage frequency or strength

A final thought or two. First, Don't rely on just one day of data. Lots of things can interfere with getting good results, tiredness, what you ate and when, exercise, and my favorite, getting so caught up in graphing that you forget to take your stupid pill. Try for a couple of weeks. Some clear  patterns should emerge. 

Second, the medications and their effects are not perfect, Even with the wonderful ability of the brain to gauge and compensate for error and imperfections in our tools and protocols for handling the problems that arise the state of the art is not equal to the job of restoring perfection. We can only approximate normal for a percentage of the day. This depends on variables like disease progression and severity, If you are faithful about keeping track of your doses and responses, this should be a helpful tool for you and your doctor in fine-tuning your medication regime to get the best results possible, in this best of all possible worlds. (See CYA notice at the top of the post)


Thursday, November 12, 2015

Alaska Book Signings, Nov, 14, December 2

Alaskans will have two chances to get their copy of "My Degeneration" in the coming weeks. I'll be giving a talk on "The making of My Degeneration" and signing copies at 4:00 pm on the 14th of November at Fireside Books in Palmer. The next opportunity will be December 2 at blue.hollomon gallery where we plan an evening event with a boatload of books. More details as they emerge. The only store in town that plans to carry the book that I know of is Bosco's (Bless you, John Weddleton). This seems a shame, as it was called "the most entertaining volume by an Alaskan author to cross my desk in some time." by longtime Alaska Dispatch Arts reporter Mike Dunham in a recent Artbeat column.

Friday, November 6, 2015

Parkinson's in the Sub-Arctic (Things could be worse. Really)

I looked at the subject line I just wrote for this post,​ "Parkinsons in the Sub Arctic" and it hit me- sounds pretty damn grim. When you put it like that, what could be worse? That is just the sort of challenge I live for. Piling worst-case scenario on top of worst-case scenario in a high-stakes game of emotional Jack Straws. So here is what could be worse: Parkinson's in the Sub-Arctic, with no coping activities!
Sends a chill right down your spine... or was that just the freezing rain falling outside?

Never fear, here are at least two reasons to hang in there for the month of November. Monday, November 9, You are invited to attend the Parkinson’s Education TeleHealth Presentation -A PDTeleConnection at 1PM. In Anchorage, 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. There you can participate in an interactive broadcast about Physical Vascular Therapy, which works to improve micro-circulation and promotes blood flow in the smallest blood vessels which may improve pain relief and promote healing.
Then, on Nov. 21 we'll have our normal Support group meeting. I plan a presentation on charting your meds to improve dosage and timing. It should be a hoot. See you then.
Your benevolent overlord,