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!