Parkinson's Events in July around the Anchorage Area

Here is what I know about what is coming up in July ...

MONDAY, JULY 14th Another riveting and interactive teleconference! You are invited to attend the Parkinson’s Education TeleHealth Presentation Monday, July 14, 2014, 1:00 p.m. The topic: Practicing good Nutrition is important for everyone. A practical and useful approach Speakers: Sabrina Gondor, CHHC, AADP, CCWS Certified Holistic Health Coach Danelle Crabtree, CMA-C, Corporate Health Alliance Representative. This seminar gives you basic, practical and useful information about nutrition with a focus about what antioxidants are; why they are important; and how using antioxidants can increase your overall wellness. For more information contact : center@spokaneparkinsons.org

Meetings are free of cost. To find the Anchorage 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 Parkinson's TeleHealth Program broadcasts live, interactive educational talks to a network of rural communities in the Northwest. On the SECOND Monday of each month, a guest speaker presents a topic eared toward the interests of Parkinson's families. The information is designed to help participants to improve their knowledge of Parkinson's disease and in turn their quality of life.

The regular meeting of the Anchorage Parkinson's Disease Support Group will be held on Saturday, the 19th of July, at 3:30. It's time for our annual picnic potluck. To make this the most festive occasion possible, we will hold the meeting at my house, 9601 Elmore Road. To find the house go to the intersection of Elmore and Abbott Roads, just below Service High School. We are South of Abbott about a quarter mile on Elmore. Our driveway is marked by a green mailbox on your left, halfway up a small hill. Our house has a green metal roof and cedar siding The event is a potluck, so bring something that people will enjoy sharing. We'll see you then!

Peter

Yet another blog post for the Northwest Parkinson's Foundation

Here is a link to the most recent of my blog posts for the Northwest Parkinson's Foundation. Making a virtue of necessity, part 365. Thoughts on slowness and PD 

A Penny For Your Thought Experiment

There is a body of thought that holds that people with Parkinson's (Hitler aside) tend to be, let's not mince words here, GoodyTwo-Shoes. Our parkie on the streets performs an exhaustive investigation and comes up with  an explanation. Being evil is too damn much work.

Life in Slow-Mo, the Upside of Speech Impairment

Anvils, A Collaboration With John Straley

Way back in the last century, the early 1990s, I think, I spent an enjoyable evening in Juneau with Sitka novelist, poet and criminal investigator John Straley. It was the final night of the legislative session and the usual intrigue was ripping like the Taku Winds through the Alaska Capitol Building . The two houses of the legislature were tussling with each other and the Hickel administration. Deals were being concocted and demands were being made. It was a wild ride as usual, and we had a fine time watching it all fall together, or apart. After the session ended, John generously sent me a copy of his book "The Woman Who Married a Bear". Then we lost touch.

Half a year ago, I ran across John on Twitter, followed him, and we struck up an electronic acquaintanceship. In the course of our tweets John learned that I have Parkinson's Disease, which also afflicts his wife.

A couple months ago he was in Anchorage on a book tour for "Cold Storage, Alaska" (which is a terrific read.) I went to his presentation, and we had a nice chat. John suggested we do some sort of collaboration. I said "Sure". These spur-of-the-moment ideas usually fizzle when the time to do the actual work arrives. So I was a bit surprised that John called my bluff with a poem, "Anvils", which appears below for your reading and viewing . I believe as you read it you will come to understand that it's not about anvils.

 

        

June Doings for People in Southcentral Alaska With an Interest in Parkinson's Disease

Turns out that when I sent out the initial version of this post,  I didn't know squat about what to expect this month. Well, that may be going a bit far. The telehealth conference will take place as I said, on the 9th of June, at 1:00. Alaska time. The topic  will be elder  law. Here is the lowdown:

Presentation Titled: Elder Law, Steps to Estate Planning and Long Term Care for everyone
and any health status. Speaker: Dick Sayre, Attorney at Law is a principal in the law firm Sayre and Sayre, PS in Spokane, Washington with a focus on Elder Law
Topic: Elder Law, Steps to Estate Planning and Long Term Care for everyone and any health status. Introduction to Durable Power of Attorney’s, Living Wills and much more. Please prepare for an 1 long presentation with a question and answer period (Specific legal questions will need to be addressed with your attorney or with Mr. Sayre at different time.)

For more information contact : center@spokaneparkinsons.org  Meetings are free of cost and are also received in several communities over TeleHealth. The Parkinson's TeleHealth Program broadcasts live, interactive educational talks to a network of rural communities in the Northwest. On the SECOND Monday of each month, a guest speaker presents a topic geared toward the interests of Parkinson's families. The information is designed to help participants to improve their knowledge of Parkinson's disease and in turn their quality of life.
To attend the Alaska meeting, proceed with all deliberate speed to the 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. )

So I did know squat about that. But the Parkinson's Support Group picnic has been moved to July. This means the meeting for the 21st June will be of the normal, everyday variety. Except I will be away because the band in which I play has a gig up in Gakona. There is no reason you should not meet without me. In fact I believe there is still much to be done in effecting my ouster as leader of the group. This will make a fine opportunity to fine-tune finishing touches on any plots for a coup d'etat. Or you could talk about the picnic, which is now set for the 19th  of July.

This year the picnic will be spearheaded by Bob and Carolyn Reinhart. (No relation to Django) You'll want to be there as Bob plans make Texas Style barbequed ribs! The place will be at my house, 9601 Elmore road (Directions to follow.) time will be 3:30. It's a potluck, we hope you will bring a salad, side dish or dessert. Bob and Carolyn would appreciate an RSVP to their phone, 345-3961 or by email to ccrinehart@gci.net Please rsvp by July 17th. Big thanks to the two of them for shouldering this task.

Enjoy the Summer,

Pete

Life in SLo-Mo: Gearswitch

Blog Bling! Don your Coast Guard Approved Glotation Device Before Reading

I can't really tell if this is a big deal or not, but what the hell. Off and On, the Alaska Parkinson's Rag, has again been named one of the top 15 Parkinson's blogs. The San Francisco Website Healthline said in their announcement that they were diligent about making their choice, and avoided calling me quirky this time around. Click here to see their attaboy, and the other recognized blogs. I'm considering this a win until further notice. Also, I plan to be insufferable for the next few days, so if you run across Pam be extra nice to her.

Something a Bit Different: A PD Poem From a Support Group Member

Here is a prose poem by a member of our support group whom we'll call Anniel. She provides a nice glimpse of what our meetings are like.

 PARKINSON'S DISEASE
. . . in sickness as in health . . .

I had thought to be first to leave since you were
the one called upon to do the caring, and you soon did
as you stood always by me.
Now I'm not so sure as you descend into your
own private hell of illness, PD -
Parkinson's Disease.
I dreamed last night of a time when you ran up the ladder
while carrying two bundles of shingles on your shoulder
something you can no longer do.
I wasn't worried then but I do worry now -
all the "I" sounds above are not about "me", but about what
"we" are - in this together.
Yesterday we met with Parkinson's friends to share
news and humor (always mixed with pain) -
the only place where PD can be funny.
Sallie wants her PD to "just go away" but says so
with laughter and everyone laughs, too,
because they know PD doesn't "go away."
We laugh with Peter, who, like many others "freezes"
while walking forward. He can only move then
by walking backward.
Once at the airport he "froze" after clearing TSA, then
had to walk backwards all the way to his gate and
onto the plane - no one even questioned him.
Some PD people "freeze" but can be "unfrozen"- or
is it "thawed"? - by only a touch. Others must be led from
the front or pushed from behind.
Some "freeze" if they try to step on a stool, or step on a line
or crack, or maybe the opposite is true, they can only
walk if ON a line or crack. Crazy.
We discussed ways of coping with loss of balance, constant pain,
garbled speech, which medicines cause trouble for some
but not others, and the things doctors don't know.
Susan is newly diagnosed and wants to know if anyone
else has trouble with speaking, drooling, falling,
sleeping, vivid nightmares, leg cramps -
The three Dans, Deanna, Peter, Sallie and Bob answer as best they can -
Susan asks quietly, "Has anyone lost their sense of smell?" All
hands go up. She looks relieved.
After all this is only a "movement disorder" that
makes your arms "shake a little bit." I once heard a
doctor on the radio say so.
He evidently has not seen anyone in the throes
Of dyskinesia, or shaking from head to foot, or walking
by running rapidly on their toes and moving mere
inches at a time. Nor has he seen anyone who has not
slept more than minutes for what seems like months - as
they cry out for nonexistent help.
Just before leaving I briefly touch again on a matter that intrigues
me, one that PD people do not often discuss, even
amongst themselves, and certainly not with doctors -
"How many of you believe you were born with PD?" Eyes always
drop as almost all hands reluctantly raise. No one, and I do
mean NO ONE, will tell their doctor this.
If a patient did, would it matter to the doc? Or would he think the person
is assigning too much importance to tracing the cause of
his illness, or maybe think he's just crazy?
You see, no one knows what causes PD. There have been no real
advances in meds or treatment for nearly twenty years. Big things
are always just around the corner.
Until the Big Things happen, we live with what is. I hope you
know how much of this I share with you as I clasp your trembling
body in the night.

Life in Slo-Mo: Parkinson's Paradox #2