Page one of a new comic: A Day with Parkinson's Disease

Hi folks, here is the first page of a new multi-pager. I don't know yet how long it will be, but multi, for sure. The plan is to take you through what a day is like with a chronic debilitating and progressive disease that undermines your ability to do just about anything physical. Think of it as positive wallowing, turning frustration, anxiety and misery into art. Ready? 3-2-1- WALLOW!!!!!

To see the entire day sequenced in one post, look here

Going Pro- Years of Free Labor on the Web about to Pay Off With New Blog Gig

That's right friends, after years of pontificating, complaining, and passing along dubious opinions and thoughts as though they were Gospel, my misbehavior  has resulted in a monthly blogging gig with the Northwest Parkinson's Foundation. My posts will begin in January. I expect that the material I create for them will be similar to what I put up here, except I will be paid for it.

I have resisted past opportunities to make money from this blog as I don't want any questions to arise about who I am beholden to. In writing Off and On, I am and have been accountable soley to readers. In return you have been kind in your comments and your support as followers of the blog. (Which reminds me: Thank you!) I am not worried about being beholden to the NWPF. After ten years experience with them, I have confidence in them as an organization. Plus, they are not paying me THAT much.

I intend to continue Off and On, although I am tinkering with the idea of pushing  it farther into visuals combined with writing. I will post links here to the work I do for NWPF, and they will link back here. If you have topics you think need addressing, I'm all ears. Post a comment to the blog, or email me at dunlapshohl@gmail.com

Thanks to readers from around the globe for the precious time you have spent reading Off and On. I hope to continue making it worth your while.

Nine Out of Ten Doctors Recommend You Read This Post to Keep up With Anchorage PD Events for December

Well here we are in the dark days of December, but remember, it's always darkest right after the lights go out, and then you can gradually begin to make out dim shapes, obstacles and impediments, and before you know it,  you are navigating like it was broad daylight, unless it's really dark, in which case you should stay in bed... um... where was I ? Oh yes! It's PD update time! Should you  decide to get out of bed, and nine out of ten doctors recommend that you do, here are some things to which you could do:

Yoga for PD, lead by Rocky Plotnick, who says:

Our Yoga for PD class will continue in December through Thursday, December 19th.
This means we meet:  December 5, 12 & 19.  Still at 1:15 pm at ADT.

There will be no class on Thanksgiving, however every year the
Inner Dance Yoga Studio has a special yoga practice on Thanksgiving.
It's at 10:00am.  Karen Greenwood is a skilled teacher and I am sure all
levels & abilities are welcome.

For January, Mike & I will be traveling so no class.

Once the schedule is approved by ADT, I will be ready to start classes again in February.

And Dance for PD, led by Carolyn Lassiter, who says:


Hello beautiful dancers,

Here is updated class schedule information:

Tuesday November 26, 2013:  NO CLASS, ADT is closed for Thanksgiving week

Tuesday December 3, 2013:   regular class

Tuesday December 10, 2013 through Tuesday January 14, 2014:  NO CLASS, teacher will be out of state

Tuesday January 21, 2014:  regular class resumes

Then of course, there is also the  Telehealth broadcast, the 9th of December at 1:00 pm in room 2401 of the Providence 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. This month: Laughter and Parkinson's.

Then it's on through the drifted snow and holiday revels to our regular meeting the 21st, at 3:3o, it will be time for our annual holiday potluck! I'll bring something main-dishy, and you all bring what you like that you think the rest of would like.

I think that about covers it. I hope to see you at some or all of the PD events  in December. Happy (insertholidayofyourchoosing) Peter

A Comics Thought Experiment

I have this recurring feeling that I should be through with Parkinson's. That I can go back to normal now. That I have done my time. It's a feeling that is reinforced each morning when I wake up. Until I try to move, I feel the same way I did in the days, more than ten years ago, before my first symptoms showed up. Then I try to walk to the bathroom. Bang goes another illusion. And yet I retain the feeling that, if I just knew whom to talk to, whom to see, they could wave their hands and make my PD disappear. So this comic is a look at how that would likely play out.

Here is the Trailer for a New Film About Parkinson's Disease

This looks promising. I backed these guys on Kickstarter, and as a premium, they are supposed to send me a video DVD. When it comes, I plan to share with our support group.  The trailer looks great

What Parkinson's Disease Feels Like

I don't know about you, but my email is filled daily with email from people who don't know me sending me generic appeals for things in which I have no interest.  So I was surprised yesterday when I opened my email program and found an email from a Website called Townspot. It was written by an actual human who had obviously looked hard for what she was after, and given some thought to what she would say. They are interested in including my videos about Parkinson's Disease on their Website as examples of quality work being done in Anchorage in the video medium.

What? You haven't seen the videos? That's an OUTRAGE! (By the way, how can "enraged" and "outraged" mean the same thing?)  Luckily for both of us, this gives me an excuse to post the videos here. Again.  These are not meant as complaints, (Well, maybe the last one is an exception) merely as descriptions of what it feels like to have this LOUSY, CURSED, INFURIATING DISEASE! Oops, sorry for that little outburst, nothing to worry about. Just a little tear in my cloak of invulnerability. Here, you watch the videos while I go off and patch that. Roll film! ( I am posting two versions, apparently iPad users cannot see the first one. Sorry the second one is cut off, but if you tap on the frame it will take you to YouTube where it willplay full-frame.)

The Parkinson's Forecast for Anchorage and Vicinity for November

​Hello one and all, here's the Parkinson's Disease roundup for the merry month of November. The word from the Parkinson's​

​ Resource center is that we will not have a telehealth broadcast in November. The program will return on December 9th. The topic for that day will be "laughter MAY be the best medicine". Stay tuned for more as details emerge. For the November meeting on the 16th, I'm trying to get the assistance dog people to come. If they do come, we'll see if we can get them to sit, and speak. So far, they are just playing dead.

And finally, put this bee in your bonnet. I have been the alleged ringleader of the support group for eight years now. It has been a tremendous experience. But I am losing the fire in my belly. It is time for someone else to leap into the breach and lead us to a brighter tomorrow. If you've been thinking to yourself lately that the meetings seem a little flat and that there is more that the group could be doing, that is a sign that you may have what it takes to be the next Parkinson's Poobah here in Anchorage. 

It's not a complicated position. Just a matter of setting up a monthly meeting, getting the word out, and being  resource/liaison to the local community and to the PD world at large. The position comes with some unique privileges. You get to work with some terrific people, and in the course of carrying out the various functions of this office, you will be the person through whom the information flows about the latest developments in the world of PD.

If you have an interest in this, shoot me an email or let me know at the next meeting, which, as noted above, will be November 16.

Thanks,

Peter

Meeting? What mee... Oh! THAAAAT Meeting...

Yes friends, like clockwork, we once again are fated to gather together! The meeting is this Saturday, 10-19, at 3:30. Huzzah! Peter, what is on the agenda? Thanks for asking, Peter. We have an exciting guest on tap, unfortunately, they haven't gotten back to me yet.  So if they cannot be inveigled to come, we are going to look as a group at the complexity of Parkinson's disease. I was surprised to hear neurologist Pinky Agarwal say that non-motor symptoms of our disease can go back as long as 30 years before motor symptoms appear. So let's all look back in our personal histories and come prepared to talk over different things you noticed that in retrospect were early signs of your PD from the time way before you were diagnosed. I will have a few items prepared to kick off discussion, and look forward to seeing you then.

The Semi-Collected Adventures of that Semi-Collected Superhero, Flash Molasses

Here they are folks! The almost full collection of the adventures in Parkinson's Disease of that plucky PWP, Flash Molasses! Apologies for vagaries in formatting. For instance,  I see there are two episodes labeled #8. The first should be labled  #7. Why it isn't, I haven't a clue. I'm pretty sure there is no episode 13, in a rare incidence of triskadecaphobia, I seem to have omitted it. But maybe there is. All the drawings can be enlarged individually by clicking on them.

You can see Molasses evolve and devolve as I shaped him over time and as PD began to sabotage my drawing. Then he snaps into focus following my DBS operation in 2008.

The final horizontal-format drawing was my contribution to Team Cul de Sac, the cartoonist's project to raise money for the Michael J. Fox Foundation. The brainchild of Chris Sparks, in honor of cartoonist Richard Thompson, Team Cul de Sac has raised over $100,000 for the eradication of Parkinson's Disease.

On Being Swallowed by a Boa Constrictor

"For the life of man is but a span,
He's cut down like the flower.
He makes no delay, he is here today,
And he's vanished all in an hour"

 ~ May Song, from the singing of Martin Carthy

Like its victims, Parkinson's Disease is slow. According to Neurologist Pinky Agarwal, the first subtle symptoms of the disease, for instance loss of sense of smell, may crop up 30 years ahead of the classic hallmarks tremor, stiffness, and slowness.

It's difficult not to think of the disease as beginning with the tremor or stiffness which you can point to as emblematic of your problem. But to appreciate the complexity of Parkinson's, we need to re-frame the way we perceive it.

Parkinson's is a brain disease, right? Well, yes, eventually. But before it reaches your brain it is silently and for the most part, painlessly, doing damage as it creeps through your gut and olfactory system.

Parkinson's is a disease of movement, Right? True, also of emotion, sleep, thinking, focus, balance, and the list goes on.  

Parkinson's is a disease of the elderly, right? Absolutely, but it is also a disease of  the middle-aged and even the young. Apply Dr. Agarwal's 30 year time-frame to my case. I was showing symptoms that allowed diagnosis when I was 43 years old. That puts the start of my disease around age 13.

Chances are I've been dealing with PD just about as long as I have been doing anything. Considering this, the temptation is to wonder how much was lost to disease without my even realizing it. I ponder what it cost over those years to cope with the subtle-but-ever tightening  squeeze of this patient boa constrictor. I brood over what I might have been able to do had I not been engaged in this lengthy unconscious struggle.

Yet, to suffer from Parkinson's Disease is to enjoy a privilege. I don't mean some perverse notion of how suffering somehow makes us better. What I mean is the sheer fact that in times gone by, it was a major achievement to live to be old enough to manifest the symptoms of Parkinson's Disease.

According to Wikipedia, Upper Paleolithic (stone age) humans had a life expectancy of 30 years at birth. (By odd coincidence 30 years is the same length of time Dr. Argawal put on the process of PD building in our systems prior to announcing itself with motor symptoms.) Neolithic humans had it even tougher: 20 short years flew by, and it was time to meet your ancestors.  You say "Bah! That was long ago." Granted. What was it a mere 100 years past? In the early 20th Century, at birth: 31 years. So much for nostalgia.

Seen in this light, it's all gravy past 30. And here we can learn from Parkinson's Disease. Take the long view. I'd rather be swallowed by a boa constrictor at 55 than be eaten by a saber-tooth tiger at the tender age of 20.