So what does it mean, to be "off" or "on"? Simple: On is when your medication is working. You can walk, talk, run or play your dobro. Off? Off is for whispering, shuffling, or posing as a living mannequin in a department store window.
My most memorable off so far was at Seatac airport this Summer after a red-eye flight from Anchorage. I made it to the gate from the jetway, and then was utterly unable to do more than mince. Ever try to mince through an airport?
Having nothing pressing to do, we decided to to sit down, drink some coffee, and wait for the medication to kick in. Time began to mince, then to crawl then went completely off its meds. A few failed attempts to stride left me frustrated and restless.
Which was when my sense of whimsy intervened. If I couldn't walk frontward, maybe I could by God walk backward. To everyone's surprise, not the least mine, I took off in reverse gear and strode backward down the terminal at a respectable rate, albeit blind to where I was going. Pam and Wiley rallied quickly and provided navigational bulletins until we arrived at the baggage claim, strangely exhilarated.
I am putting together a bulk order of the Parkinson's video from neurologist and PWP Dr. Dave Heydrick. If you are in the area, can make it to a meeting to pick up your copy, and would like to be included please respond by this Friday, Feb 1. They will give us free shipping which puts the cost at a flat $15.00. For more info about the DVD, you can look up the Web site here
Full disclosure: I worked on this project and have a stake in its success.
I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to inexorable progression of a creeping paralysis of voluntary movement. The loss of the ability to walk, to speak, to draw. A disease treatable with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told was coming.
But the last thing I expected was the visitation of the Spandex Angel. After decades of struggling with God, I'm a religious skeptic. So I was taken utterly by surprise when a voice that spoke without words but with unmistakable intent and intensity came to me, and said "You have to exercise. If you don't, your downward spiral will be even steeper and more drastic."
As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts of the Cleveland Clinic that show definite symptomatic relief after intense exercise. Here's an excerpt from the clinic's web site:
"Dr. Jay Alberts, a neuroscientist at the Cleveland Clinic in Ohio, says in the past, exercise hasn't really helped patients. But by pushing them out of their comfort zone and forcing them to pedal much faster than they would normally, symptoms can improve more than they do from drugs.
'After eight weeks of exercise, symptoms have improved 30 to 35 percent for patients, which is a pretty dramatic improvement,' Alberts explained."
What's more, there are other studies that show possible neuroprotective effects. And exercise is a proven mood elevator. That's significant for those of us who have PD, which is often accompanied by depression.
Plus exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. And no forms to fill out or file. One note: It is wise to consult your doctor before ramping up a serious exercise regime.
But take it from me, take it from Dr. Alberts, or take it from the Spandex Angel, "YOU GOT TO MOVE!"
Heads up, caregivers, it's the return of Betty Berry, care partner extraordinaire. Betty will lead a separate session for a chance for you all to debrief with one another. For the rest of us, Lory will regale the faithful with tales off her exploits at the PAN convention taking the message to the powers that be in D.C.
The usual time, 1:00 p.m. on the third Saturday of the month, in this case the 16th of February. The place: The Anchorage Senior Center. In the meantime, keep exercising.
That didn't take long, did it? As promised, here is an image. (You can click on it to make it larger) While working on some graphics for a DVD about Parkinson's produced by Dr. Dave Heydrick (more on that later) a familiar visage leaped out on me as I progressed through the renderings of a deteriorating brain. This gig justs gets eerier all the time.
Greetings to all with an interest in Parkinson's Disease. My name is Peter Dunlap-Shohl, and I lead a support group for people with Parkinson's Disease, their care partners and families in Anchorage, Alaska. (A note to the power-hungry, I am actively soliciting coup d'etats to my regime, send me your takeover plans, while I peruse brochures for sunny havens for ousted strongmen. No reasonable offer refused) This is my my latest attempt to set up an interactive meeting place for those of us coping with a movement disorder in a city that often seems to have movement disorder problems of its own. You can see perfectly able people falling down here all winter, let alone those of us with balance impairments.
I'll post meeting schedules, agendas, speakers that are coming, and other items of interest. I hope that others will chime in, and we will have a clearinghouse here of our shared savvy about coping with this affliction.
This will be as interesting as we as a community make it. I know you're out there, Think loud and sound off!
ps: As a cartoonist, I plan to post drawings here regularly that deal with PD. As soon as I figure out the tool to do this.
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "