Tuesday, July 20, 2010

Home-made hope: Pete to speak at Hope Conference in Seattle this November

Excitement! Suspense! Harrowing adventure!...That's what's in it for me. What's in it for you when I speak at the Hope Conference in Seattle? I plan to look at the idea of "Home-made hope, lessons learned in spite of myself in rebuilding your life after diagnosis". The Hope Conference is an event for people with Parkinson's Disease, their families and care givers. Here is a summary from the American Parkison's Disease Association Seattle Chapter

Saturday, November 6, 2010

Seattle Airport Hilton Convention Center
17620 International Blvd
Seattle WA 98188

The American Parkinson Disease Association,Washington Chapter, and the Northwest Parkinson's Foundation are co-hosting the region's largest educational symposium for patients, family, friends, and caregivers.

Guest Speakers:
Dr. Jay Alberts, Biomedical Engineer Assistant Professor at Cleveland Clinic, Lerner Research Institute
"Is Exercise Medicine for Parkinson's Disease?"
Dr. James Leverenz, Associate Professor, Depts. Neurology and Psychiatry, University of Washington
"Research Update: Biomarkers and PD"
Dr. Monique Giroux, Movement Disorder Specialist, Medical Director of the Northwest Parkinson's Foundation
Wellness Center
"Wellness Choices for Brain Health"
Peter Dunlap-Shohl
"Homemade Hope, How to Thrive Today with PD"
Matt Ford, PT, MA, PhD, University of Alabama at Birmingham
"Music is Exercise for the Parkinson's Brain"

Thursday, July 8, 2010

What dreams may come

So it's time to turn in after another day of tremors, dyskinesia and muscle stiffness. As a hard workin', hardly workin' Parkie, you're ready for a well-deserved three or four hours of sleep before your nightly high-stakes race to the toilet. Well not so (pardon the expression) fast, bradykinesia boy. It would be un-parkinson's to expect any part of life to be unmolested by this all-pervasive and all-perverse malady.

It seems that although we people of the Parkinson's persuasion do not have the liberty to move freely during the day, our addled nervous systems grant us the unusual ability to physically act out our dreams. Why is this an unusual ability? Well, humdrum, everyday, normal people have a mechanism that restricts motion while they sleep. This keeps them from damaging themselves, or others, while acting out their dreams.

In still another of the ironies of Parkinson's Disease, a person who has Parkinson's may paradoxically act out their dreams. Which, as you may have guessed I did this morning.

Let's join my nightmare just as I am about to deliver a desperate blow to a lethal
and deranged cab driver. It's the one chance anyone has to stop this madman. Riding a surge of adrenalin I swing hard for his head and wake on the jolt of the abrupt connection of bone to bone, suddenly jerked alert by the pain in my hand as it slams into my cell phone that a second ago had peacefully rested on a box next to my bed. The phone flies off the box and skips across the floor into the kitchen, seemingly anxious to put as much distance as possible between itself and the unpredictable violent lunatic in the bed.

You always hurt the ones you love.

Thursday, July 1, 2010

Local Man Finally Dies of Parkinson's Complications

Note: At a recent APDA-sponsored Parkinson's Disease seminar a speaker suggested that one way of coping with bad news is to realize that there are people who have it worse than you. Fair enough, but somewhere in this weary world there must be the ultimate loser, that last guy whom everyone else is fortunate not to be. As a public service, Off & On has dug up this hapless schlemiel, one Herb Sleeper of Fargo, North Dakota. The following is his obituary as it appeared in the Fargo FreePressArgusChronical Weekly Shopper.

Relatives of Herbert (Herb, Bert) Sleeper are pleased to announce the passing of their late father/husband/brother/cousin/uncle. Members of the family were universal in their sense that "A great weight has been lifted from our shoulders" as his brother Harold (Heavy) Sleeper was eager to tell this reporter. "For starters, he lived in Fargo" his brother continued "If you could call that living". Harold fondly recalled how when they were young they would roam the wide plains at will, getting bitten by ticks, stung by bees and assaulted by motorcycle gangs. "All God's creation seemed to be against us in those days" he said, his eyebrows dancing as he recalled how his brother had been struck 12 times by lightning."Not uncommon for those of us living in 'The lightning strike state' but a bit unusual for just one day" he said with a pimpish grin.

"Maybe it was the lightning that caused his Parkinson's" his wife Shelly said, "Or maybe it was the pesticides that he routinely drank after hearing a friend complain of a stomach bug. Whatever. Of Herb it can be truly said that he took his early-onset diagnosis lying down" She remembered with clear distaste how Herb would complain about his symptoms in a voice that grew softer and softer by the month. He wanted speech therapy", she laughed as she recalled, "But we were all against it".

Still she was unable to disguise a note of admiration as she looked back at Herb's fierce struggle to not do anything about his deteriorating condition. "He'd blow off taking his pills, missed Doctor appointments, and hey, forget exercise!" she smiled. "He said he'd die before he joined a support group which come to think of it, I guess he did. His one accomplished goal in life. His only goal now that I think of it. Pitiful".

Herb will be remembered as a great indoorsman, who liked nothing better than rising early to hunt for his remote. "He and that damn remote were inseparable" recalled his wife. "It was agony waiting for him to change channels what with his tremors and slowness. We used to watch infomercials for hours as he attempted to aim the thing at the TV. When there were no good infomercials on, he would lie endlessly on the couch moaning inarticulately to himself and any unfortunate soul who happened near. No matter how bad things got, Herb was willing to share the misery. He's better off now that he's dead. Hell we all are." No services will be held . In lieu of flowers the family asks that you simply send them money, unlike Herb, therapy ain't cheap.