Monday, October 5, 2015

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.

Friday, September 25, 2015

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.

Friday, September 11, 2015

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

Tuesday, September 1, 2015

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.

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.

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

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

"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

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

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

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

Carolyn Rinehart submitted two

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

PD is the pits
But we still can nurture our

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.