Blog Throw down: Will Off & On The Alaska Parkinson's Rag Be Recognized as One of the Best Health Blogs, period? It's up to You.

UPDATE I have removed the voting mechanism from  this post for reasons outlined in the comments below.

The organization Healthline has decided that this very blog is eligible to be named  one of the tippy-top health blogs on the World Wide Web in 2015. They will determine the winners through a vote of you, the faithful that flock here for, well,  whatever it is you flock for. You can vote once a day until the contest closes, so vote early and vote often by clicking on the badge below. Thank you! 

Just in the St. Nick of Time, It's the Anchorage Parkinson's Calendar!

I know you are busy, so I'll be brief.

Telehealth next MONDAY DEC, 14 at 1:00. Subject will be Acupuncture, what it is, what it does. 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.

December support group meeting will be held Saturday December 19th, at 3:30. It's extra-cold and dark outside, so that must mean it's time for our annual holiday potluck. I will bring something main-dishesque, and plastic forks, spoons and other implements of destruction. You bring whatever you like that is tasty to share (not that any of us can taste anything, buy can't we pretend?)

Those of you that ordered books will be able to pick them up at the potluck!

Until then,

Pete, out

My Degeneration" Featured in Thoughtful Alaska News Dispatch Article by Mike Dunham (Cross post from Frozen Grin)

A perceptive and thoughtful article from Mike Dunham appeared in the Alaska News Dispatch on "My Degeneration" putting it into the larger context of the Graphic Medicine genre. The article yielded the following "... the book presents much of the trauma in the garb of absurd humor. Dunlap-Shohl devotes several panels to recounting how nervous or insensitive doctors broke bad news to patients. Some of their manners were so crude that they seem drawn from the sad, wicked comedy of Vonnegut or Balzac." To which I can only say "Thank you". 

(Worries to self about raising expectations sky-high, then remembers, Mike likely the only living person in Western Hemisphere to have read any Balzac.)

Book Launch for "My Degeneration" Tonight!

One night only! Laughter, tears, tremors, ogres, true love, software, life's bitter realities and moments of transcendence, all in one laff-riot, tear-fest, a wrenching roar of the imagination, a cold, hard look at reality, the "My Degeneration" book launch at blue.hollomon gallery is tonight! 6:00 to 8:00at the Olympic center, a Zamarello mall near you, 36th and Arctic Boulevard to be exact. And yes, I will personalize your copy working boldly, without spell-check. Please come, see you there!

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.” " 




 

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)

 

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.

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,

Pete

"My Degeneration" My book About Coping With Parkinson's Disease is Now Available

My advance copy of "My Degeneration"

Finally, after what seems like, and actually was years in the making, The Penn State University Press has released my "graphic narrative" of what it's like to be forced to deal with Young-Onset Parkinson's Disease. What's more, you can order it at a sale price right now. I hope that this book will be a comfort and inspiration to my fellow people with Parkinson's. And I hope it will be a provocation to consider how best to respond to this indefatigable disease that affects all parts of life as well.

So please read it and let me know what you think. Otherwise I'll be forced to rely on the words of people like Bill Bell, co-founder of the Northwest Parkinson’s Foundation, who was kind enough to write “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.” Or Tom Kizzia, Author of the riveting "Pilgrim's Wilderness" who had this to say “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.” Heck, you could read this book for the blurbs alone!

As far as I can tell, this is the only book of its kind on Parkinson's available in the known universe. Here is a sample page from the second chapter "Learning to speak Parkinson's "

Alaska, Marijuana and Parkinson's

Yesterday we had a potentially controversial topic as a meeting subject: Marijuana as treatment for PD.  This post is based on comments I made to frame the issue and ease in the speaker.

We people with Parkinson's Disease are fond of noting that every person's case of Parkinson's is unique. What works for one person may result in dramatic and unwanted side effects in the next. Each case demands an individual approach.

The case of marijuana as a medical intervention, too, is almost unique. There is not much in the way of studies on marijuana and Parkinson's because it has been declared illegal to research this substance in the customary settings, at least in the United States. This is loopy and counter-productive. If we can tolerate morphine in medical practice, surely marijuana can be investigated for medicinal value as well.

The ban on studying the medical potential of pot is not absolute. If a researcher jumps though enough hoops, they may do science with cannabis. An example: a study on Pubmed, a free resource from the National Center for Biotechnology Information (NCBI) at the National Library of Medicine®, which says in its abstract "The use of cannabis as a therapeutic agent for various medical conditions has been well documented. However, clinical trials in patients with Parkinson disease (PD) have yielded conflicting results. The aim of the present open-label observational study was to assess the clinical effect of cannabis on motor and non-motor symptoms of PD.
METHODS:
Twenty-two patients with PD attending the motor disorder clinic of a tertiary medical center in 2011 to 2012 were evaluated at baseline and 30 minutes after smoking cannabis using the following battery: Unified Parkinson Disease Rating Scale, visual analog scale, present pain intensity scale, Short-Form McGill Pain Questionnaire, as well as Medical Cannabis Survey National Drug and Alcohol Research Center Questionnaire.
RESULTS:
Mean (SD) total score on the motor Unified Parkinson Disease Rating Scale score improved significantly from 33.1 (13.8) at baseline to 23.2 (10.5) after cannabis consumption (t = 5.9; P < 0.001). Analysis of specific motor symptoms revealed significant improvement after treatment in tremor (P < 0.001), rigidity (P = 0.004), and bradykinesia (P < 0.001).”

 Researchers found in their conclusions:

“There was also significant improvement of sleep and pain scores. No significant adverse effects of the drug were observed. The study suggests that cannabis might have a place in the therapeutic armamentarium of PD. Larger, controlled studies are needed to verify the results."

So there seems to be some scientific weight behind the idea that what we called "dope" in high school harbors significant value in dealing with the symptoms of PD. Unfortunately, this potential value has been underexplored as it became entangled with our feelings and laws concerning what substances society will tolerate as legal when it comes to getting high.  

Alaska has long been the exception to the general legal treatment of marijuana. It has been lawful, as a matter of privacy under state law, for an individual to possess a small amount for personal use since the Alaska Supreme Court's Ravin Decision in 1975. Further, Alaskans subsequently voted to legalize marijuana for medicinal use, with the law signed in 1998. Covered conditions for use of medical marijuana include Cachexia, Cancer, Chronic Pain, Glaucoma, HIV or AIDS, Multiple Sclerosis, Nausea, and Seizures.

The voters of Alaska went another step in 2014, legalizing Marijuana for personal recreational use. The state is still formulating regulations that will govern the fine points of the use of marijuana, but the law clearly says "Adults are allowed to possess up to one ounce of marijuana and to grow up to six marijuana plants, three of which may be flowering, in their households. They may also possess all of the marijuana grown from their plants at the location where the cannabis was grown. Individuals 21 and older may gift up to an ounce of marijuana and up to six immature plants to other individuals 21 and older. They cannot be compensated for these transactions. Adults 21 and older will also be allowed to purchase up to an ounce of marijuana from properly registered businesses."

So  where does this leave us? We have some scientific evidence from the U.S. and elsewhere, that marijuana is useful for PD symptoms, among them tremor, rigidity and bradykinesia, as well as Parkinson's-associated pain, and sleep trouble. Marijuana, with restrictions, is legal for personal use under state law and, for all practical purposes this appears to be tolerated by federal policy. In the present climate we can now test for ourselves as best we may how cannabis affects our symptoms.

I would prefer if the substance had been through the scientific mill years ago, but there is enough promising evidence that it may alleviate some Parkinson’s symptoms that it would be cruel to force sick people to wait for what has already been delayed too long by misguided politics. Perhaps, like our past fear of marijuana, our present hope for the plant’s power to alleviate PD-related suffering is overblown. The only way to find out is to try it. We can thank the humane laws of our state for the opportunity.

Deep Brain Stimulation Surgery Q & A With Doctor Peter Nora of Swedish Hospital in Seattle

"Deep Brain Stimulation" (DBS) sounds like a term from a sci-fi novel: "I was afraid of this. The aliens  have enhanced their intelligence with Deep Brain Stimulation!" Or maybe some new-age ritual: "I did a wheat grass juice cleanse and then we did some Deep Brain Stimulation, and now I'm polishing my aura." Actually it's neither. Instead it's cutting-edge surgery (sorry!) that can restore a great deal of motor function to patients who suffer from Parkinson's Disease, Benign Essential Tremor, or Dystonia. Here is a good basic look at the operation. Essentially what the procedure does is equip patients with a battery that zaps a part of the brain that goes haywire in patients. A device is implanted, and pulses a tiny jolt of current that discourages the misbehaving portion of the brain from acting up. It's easiest to think of DBS as a "pacemaker for the brain."

In my case, the surgery was done about six years ago in San Francisco, and results have been impressive. My tremor is no longer prominent, I am able to walk without "freezing" much more frequently, my "on" time is longer, my sleep is less fitful, and my bladder urgency is much tamer. I am also able to get by with substantially less medication than pre-DBS days, and this minimizes unwanted side-effects.

While DBS can have great impact on motor difficulties, it is not helpful for the troublesome non-motor problems associated with PD. These include loss of balance, depression, constipation, apathy, cognitive problems and more. And DBS can  exacerbate balance and speech problems as well as inducing depression and mild cognitive problems.

Why am I telling you all this? Because  a team of practitioners who perform the operation at Swedish Hospital in Seattle recently made the trek North to give an informational meeting on the procedure, and what's new in the world of DBS. I went and compulsively took notes. Having compiled the information, what can I do but share it?

The session was sponsored by Medtronic one of the two manufacturers of FDA-approved DBS devices. Dr. Peter Nora introduced himself, and visiting members of his surgical team, and then went around the room taking questions. I made notes of what seemed to me significant and new. Here is what I gleaned.

1) You still must be a "good candidate " to qualify for and to benefit from the operation, but exactly what that means is an evolving standard. They still do not perform the operation on patients with significant dementia problems, and noted that it can actually worsen dementia. Dr. Nora explained that the diagnosis of dementia had to be done by a neuropsychologist as dementia can be difficult to sort out from apathy or depression, which can also be present in PD. Another still-standing requirement is a good response to levedopa. A significant cut in symptoms when l-dopa therapy is introduced is correlated to  a successful outcome with DBS surgery.

What is different now is that, in Dr. Nora's view, it is appropriate to consider the operation much earlier in the course of the disease, instead of as a last resort, when all drug interventions are no longer effective. He urged the gathering to  decide for themselves when they are ready for the operation, not be sidetracked for reasons of "It's not time." His question: "Who better than the actual patient can say when they are ready?" He acknowledged that caution was in order. The dangers of brain surgery are significant, infection, and/or bleeding can occur. But they only happen in "One percent of one percent" of operations" says Nora, who has had 850 DBS patients. A number of recent studies have shown that the earlier an intervention is introduced, the better the long-term outcome.

2) DBS, in Dr. Nora's view is a bridge to cross on the way to better treatments down the road. In the immediate future he predicted that improvements coming to the mechanism itself are a system that will automatically modify the discharge it emits based on feedback it gathers from the brain. 

3) Does DBS slows disease progression? I asked this question based on recent reports that this is true. Dr. Nora agreed that it does, with many caveats. He pointed out that there is no empirical proof, in the form of a double blind study  showing difference between a control with sham-DBS and an actual DBS  implanted person. The cases of Azilect and Eldepryl, both of which seemed to show slowing of the disease but ultimately were found not to affect progression after investigations that took significant time and expense, show how tough this is to actually prove.

When I asked him if there was an underlying explanation that could account for DBS-slowed disease progression, his theory was that DBS enabled a return to the ability to exercise and socialize, to participate more fully in an active "normal" life. These activities have been correlated with better long-term outcomes for Parkinson's patients. The more DBS allows you to undertake healthy activity, the better-off you are.

4) Long-term lasting effect of DBS is fairly strong. Over ten years there was found a 20% decline in effectiveness.

5) A moment of heresy. Dr. Nora "I'm going to get shot for this, but patients are the best prescribers of medicine." He went on to explain that patients who were in tune with their symptoms are in a better position to modify dosages through careful experimentation than doctors who oversee hundreds of people's drug regimes.

6) Dr. Nora said that we were lucky to have an unusually high number of good neurologists in Anchorage.  Take a bow, local practitioners!

October Parkinson's Disease Activities in the Anchorage Area

October means Old Man Winter will soon beat down our doors. But he'll go away after a while, unlike PD. So what choice do you have but to take notice of the Parkinson's events coming to Anchorage in October? There are only two coming, so it shouldn't be too difficult to keep track.

On Monday, October 12, A PDTeleConnection at 1PM (To find the Alaska meeting proceed with all deliberate speed to Providence Hospital West campus 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 The speaker will be Deb Fry, Owner and Move Manager of a business that specializes in moving seniors. Topic: Pack with Compassion - A Spokane-area Senior Move Management Business that helps seniors move or helps them stay at home and age-in-place in a compassionate process for either.

​ Our routine support group meeting (insofar as such an extraordinary gathering could be termed "routine) will occur Saturday the 17th in the fifth floor West lounge of the Pioneer Home in downtown Anchorage. Topic: TBA​

Corrections, suggestions and sarcastic remarks are welcome, comment below.

Ploddingly,

Peter

Denial on Trial, (Originally written for the Northwest Parkinson's Disease Foundation)

ICYMI here is a post from my series written for the NWPF (BTW, They are streaming their annual Hope conference this year, so you can see it on your computer! Interested? You may register here)

Denial on Trial

                  
By the time we reach adulthood, most of us have learned at least a smattering of discretion. We have our private thoughts, and recognize the wisdom of keeping them to ourselves. This helps us avoid scenes like the following...

Hey, you... Yes, carefree healthy guy, you. You can’t hear me? Well focus and listen up, ‘cause I know something you obviously don’t. Of course I’m shaking. Of course I’m slurring my words. I may lurch and even fall, but no, I’m not drunk. And besides, we’re not talking about me, we’re talking about you.

You think you’ll always have a steady hand and that resonant airhorn of a voice? you think you’ll always have the luxury of gliding across a room without fits and starts, no  hitch in your unconsciously proud stride?  You think walking is simple magic, of which you will always be the master? Maybe.

I wouldn’t bet on it.

You think you’ll always have your power of concentration? Your ability to slide easily between complicated tasks? Well concentrate on this. You may be right. But what if you’re wrong? And I’m here to tell you that people are wrong about this kind of thing all the time. Who for instance? Well, me. But this is about you, not me.

Here is what I’ll bet on.

I’ll bet that before you know it, it will be too late. That you, or a loved one, or a total stranger will make a bad decision at a critical moment that changes your life forever. Or that something out of anyone’s control will cross your stars. It may have already happened and you just haven’t heard. Yet. All it takes is a forgotten turn signal, a twist in a fall, an overlooked bite from an infected insect.

You know this, but you need a reminder. Something to make it real.  

People with Parkinson’s who refuse to acknowledge their disease are said to be in denial. We’re told helpfully we need to get through that, and move on to dealing with the disease. But what about all you other people out there who are borrowing time and only temporarily able? How deep is your denial about the vulnerability of your health?

So look at me. See this peck of pills I take every day just to approximate your supernatural ability to defy gravity and stand erect? See the time I spend wrestling with Newton’s laws, an object at rest, tending to remain at rest, while you go  jaywalking obliviously through the loopholes?

I don’t want pity, I’m doing alright, considering. And I’m not trying to tell you what to do, or eat, how much to exercise, how much to sleep, or that if you have your health you have everything. I’m not saying live life’s every minute to the fullest before it’s too late, that you don’t know what you’ve got until it’s gone, or any other bit of cliched good advice that we all know and have heard ad nauseum.

Like I said, (and yes, I “protest too much,”) it’s not about me. It’s about you. I just hope you learn from my experience, acknowledge the facts, appreciate what you have and and then live according to whatever seems to you best in light of reality. To live as though these things matter.

Why should I care if you realize that this is important? This Parkinson’s of mine must be good for something. If that thing is spurring you to realize how vulnerable we all are, that’s way better than nothing.

Book News, Advance Copies of "My Degeneration" Surface

It's almost here! The first advance copies of my book chronicling my effort to deal with Young Onset Parkinson arrived yesterday at my publisher's office at Penn State University. Below, is a photo giving a bit of the flavor of the book. It should be available in early November. Information on ordering here

Parkinson's Activities for the month of September in the Anchorage Area

With Winter on its way we need distraction from dwelling on the coming cold and dark! What better distraction could there be than Parkinson's Disease? The diversion kicks off Monday, September 14 at 1:00 pm. with a telehealth interactive broadcast. The subject will be "The benefits of Tai Chi for everyone" taught by Kaiya Treffry - Instructor for ACT 2. 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.

As for our regular support group meeting, the magic eight ball says it's on for Saturday the 19th of September, but details beyond that are hazy. The Northwest chapter of the American Parkinson's Disease Association had been talking about staging a small conference for us on that day, but I haven't heard from them for awhile. Details as they emerge from the inky depths of the eight ball. To be continued...

This just in from the eight ball, it turns out that I weill have to miss this meeting, as I will be up in Denali Park, driving the road with a lottery winner. I encourage people to meet anyway and discuss their PD concerns with one another.

Peter

Informational Meeting About Deep Brain Stimulation Surgery to be Held October 3rd

You can bring your questions about DBS to neurosurgeon Dr. Peter Nora at the Captain Cook Hotel Oct. 3. Details follow. (NB: They would like an RSVP for refreshment orders, I presume. RSVP info at the bottom)

"DBS Interest Group"

For anyone who has DBS or is interested in learning more about it!

Including people with Parkinson's, essential tremor and Dystonia

Saturday, October 3, 2015 - 10:30am-12p

The Hotel Captain Cook

Whitby Room (lower lobby)

Dr. Peter Nora, Neurosurgeon Swedish Neuroscience Institute 

RSVP: Keely.Dailey@medtronic.com or (425)213-2147

Refreshments provided

Life in Slow-Mo: Freeze Tag

Medication is a constant strategy game. Sometimes, I lose.

Lifestyle Tool Kit for Parkinson's Disease. A Video from the Davis Phinney Foundation

Here is a video that gives excellent pointers on things you can do with diet, exercise etc. to manage your PD better. From the Davis Phinney Foundation:"Claire Henchcliffe, MD, Phil of Weill Cornell Medical Center in New York City gives viewers tips to build their own “Parkinson’s Lifestyle Toolkit,” including medication awareness, medical support, nutrition, exercise, emotional well being and complementary therapies. Dr. Henchcliffe discusses warning signs in each of these critical areas to living well with Parkinson’s and provides recommendations on how to effectively integrate them into daily life. Her prescription for taking action includes practical steps, designed to improve quality of life right now and make it last."

Parkinson's and Creativity, an Experiment

Some time ago I came across a story in the news that said people with Parkinson's who were taking Sinemet were more creative than ordinary, generic people. This of course raises many questions about creativity itself, let alone the creativity of those who have this strange and capricious disease. Raised questions, like raised doughnuts, are hard to resist. So at our most recent meeting I ambushed our support group with the following challenge: Write Haiku about Parkinson's disease.

Haiku is a form of Japanese poetry that calls for a three-line poem which is structured to have 5 syllables in the first line, 7 in the second, and 5 in the last line. The lines needn't rhyme, although I think the poetry police will look the other way if they do. Nature is often a topic, but where the form has been appropriated by other cultures the tradition has grown a bit loose.

Where I could detect expression on group members faces as I passed out paper and pens, I thought I saw a certain unwillingness to dive into the murky waters of creative endeavor. To their credit, most people came up with something in the silent quarter hour that passed after the supplies were handed around.

So what do the poems that came out tell us about PD and creativity? Not as much as I'd like. I unscientifically forgot to inquire if there were any people who had PD but were not taking Sinemet, and at least three of the participants were caregivers who did not suffer from Parkinson's themselves. There were no controls, and this is a tiny number of participants that in no way comprises a scientific sample. But we did get some unusual perspectives on the disease, so I hereby declare the experiment a smashing success.

Here, in no particular order are the poems I managed to collect after the meeting.

These first three Are by Pam Dunlap-Shohl.

1
I really care, but
For Parkinson's, not so much.
It saps my patience

2
Two steps forward, and
Three steps back. A halting dance,
bereft of grace

3
"What?" I said, "What?"
"I didn't catch that the first time."
"What did you say?"

Here's one from Bob Rinehart

I shake like the
leaf of Poplar Tremaloides
Sinemet stills me.

Here are mine

1
Drowsily I ask
Wow, do I still have PD?
Let me check... oh, damn.

2
Festination. It's
halts and lurches between you
And your destination.

3
As the rains of Fall
Tumble to the sodden earth
I follow their lead.

Carolyn Rinehart submitted two

1
I don't want PD
In our lives but it has brought
good friends through this group.

2
PD is the pits
But we still can nurture our
Creativity.

And we'll let Susan Wong have the last word

Feels like aliens
Living rent-free in my soul
Who invited you?

If you have a PD haiku you would like to share please submit it as a comment on this post.

Pugnacious Post for the Northwest Parkinson's Disease Foundation

In which I tell the healthy what is what, and where to get off. Right here .

Decoding the Parkinsonian Face, Now in Handy T-shirt Form

This is probably the most popular PD cartoon I ever drew. I've gotten requests to reproduce it from around the World, from Poland to Australia. Now it can come to you wherever you are!

Words can mean completely opposite things. We add the cues necessary to their proper interpretation through our tone of voice and our facial expression. "Great job" means one thing when declared in approving tones with a smile, and just the reverse when intoned with sarcasm and a frown.

Unfortunately, both speech and facial expression can be compromised by Parkinson's Disease. As PD erodes our muscular control over our faces, we become enigmatic, the normal non-verbal cues people expect from facial expression are hidden by the "Mask of Parkinson's".  Our control over speech and facial expression slip away so slowly those of us with PD can easily overlook the changes. This can and does lead to confusion as people project meaning that isn't intended by the speaker.

This drawing serves as a reminder to ourselves that we can come across as severe, pissed-off, or, at best, inscrutable. It also functions as a heads up to those unfamiliar with this facet of PD. Available from my on-line store in the new simplified and spiffed-up version that appears below.

Anchorage and Environs Parkinson's Activities for August

I'm a bit late with the August Parkinson's report. But don't worry, nothing has happened yet, so you haven't missed anything. That all changes on August 10th (This coming Monday) when you are invited to attend the Parkinson’s Education TeleHealth Presentation, a live interactive teleconference at 1pm. 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. The presentation this month will be an overview of Parkinson’s for Parkinson’s community members, PD:101 Back to the Basics Newly Diagnosed, Family, Friends, Caregivers, Professionals and Students.

This  will be followed as sure as the word "appalled" follows the word "shocked" on the 15th of August at 3:30 by our traditional and customary monthly support group meeting high atop the luxurious and elegant Anchorage Pioneer Home in the swanky West Lounge.  We have no plans for an outside speaker, but I have an idea for an activity that I promise will be fun and thought-provoking, or double your Parkinson's back!

Capo de Tutti Capi, Alaska Division,

Pete

More Book News! The Final Version of the Cover

Looks like the book as idea is within a hair's breadth of being done. It will begin the passage from idea to object on Friday as the computer files are transmitted to the printer. The image of the cover below was sent to me this morning to check for errors. I was surprised to actually find one. They have the name of this blog as "The Alaska PD Rag" instead of "The Alaska Parkinson's Rag. Should be a small and easy fix. If not, I can always change the name of the blog.

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.

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.

Peter

Bright, Shiny Object, Meet Dull, Distractible Brain

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,

Peter

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.

"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.

"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.

Brand New Life in Slow-Mo: Stressed Up to get Messed Up

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.

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.

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.

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