Parkinson's Disease, Uncategorized



This post is not about Noh, the traditional form of Japanese theater, but about nOH, a pesky PD parasite that has paid me an unwelcome visit.

Neurological Orthostatic Hypotension disrupts the body’s thermostat, alters the plumbing, unsteadies the legs and saps energy.

It’s like that pilot fish riding along with the shark. A very unwelcome hitchhiker.

It has me so warm I am shirtless on the lanai writing this post. It has virtually killed my Rock Steady boxing sessions. It plays havoc with carbidopa-levodopa, producing paradoxical sleepiness. My mind and spirits, fortunately, are intact.

But it’s taxing my patience.

Backing up a few bars, this critter disrupts the autonomic nervous system. Goodbye normal kidney function, temperature regulation and blood circulation. Hello edema in the ankles and numerous visits to the loo for pees.

My very astute internist didn’t know what I was talking about when I said, “I’ve got nOH.” My equally astute MDS put me on Rx hold–instead of lobbing something nasty at this creature, STAT. Try compression stocking and diet alterations, was the message. We’ll see how those work.

The reputable PD literature says nOH is common in PD and Multiple System Atrophy (please, not that.) It notes that nOH often signals entry into mid-stage PD. I don’t like that one bit, either.

Check out the Parkinson Foundation’s take on nOH:

Recall my earlier post (click here) about burning up on then airplane ride from Houston to Portland for the world Parkinson Congress. That was the tip off to what was brewing inside me.

I will keep writing as I pin this guy down and figure a course of action. Yep. Self-Efficacy to the front. My doctors and I are certainly not interested in another medication, but it may be the wisest way we have to go.


Sully’s Leadership Lesson


Few people have the opportunity to demonstrate their leadership in such a dramatic way or to such a wide audience as Chesley Sullenberger, “Sully”.

Of course, not anyone happens to be piloting a US Airways jet that loses its two engines after hitting a flock of birds. And seven years later shoots to international recognition by way of an extraordinary movie directed by Clint Eastwood and starring Tom Hanks as Sully.

My not-so-retired minister, Jim Harnish, refers to Sullenberger’s crisis management performance as “level 5 leadership,” meaning abdication of self in total service of others, in his recent blog post concerning the movie [read it by clicking on this link]. This type of leadership is the ultimate goal for seekers like me. 

In case you were wondering, I was a total mess watching SullyI cried/laughed/cried again from opening credits to end credits. I was so PD “emotionally incontinent” that I bolted from my fifth-row seat to last row. My intent was to not disturb movie goers who did have their emotional act together. Struby, my wife, took my flight from her side with her usual grace and equanimity.

To circle this back to PD SELF, let me recall Albert Bandera’s motto: “May the Self-Efficacy Force continue to be with you” this day and those to come.

But wait, before you sign off, an ad in service of the PD community:


Contact Susan Rose at (812) 229-0134, or at