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.

Thursday, July 2, 2015

July Parkinson's Update For Anchorage Area: The Hidden PD Agenda Revealed!

Sources who wish to remain anonymous whispered the following to reporters who wish to remain anonymous. Authorities high in local Parkinson's Disease circles confirmed there will be a telehealth broadcast Telehealth July 13, 1:00p.m. Dr. Jason Aldred, Neurologist and Movement Disorder Specialist will tell us about integrating TeleMedicine into healthcare for Parkinson’s Community members in communities without direct access to PD Specialists – including current TeleMedicine research projects being done within their practice.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. Tell them Peter sent you and give the secret handshake. You remember the secret handshake, right? Just let your hand shake, and you will be admitted)
The regular support group meeting will be  at 3:30 on the 18th of July at the Pioneer Home. We will have two presentations, first a short warm-up presentation on medicare, then a presentation on care giving from long-time support group volunteer Betty Berry.
See you there, do not be followed.