Friday, August 28, 2015

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 
Refreshments provided

Friday, August 21, 2015

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."

Tuesday, August 18, 2015

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 urches 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 .

Wednesday, August 12, 2015

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.


Thursday, August 6, 2015

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

Wednesday, August 5, 2015

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.

Saturday, July 11, 2015

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.