Parkinson's Disease, Uncategorized

NOH DRAMA

noh-drama

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: http://www.pdf.org/pdf/fs_orthostatic_hypotension_15.pdf

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.

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3 thoughts on “NOH DRAMA”

  1. Gil, We are so sorry to hear of your problem. It is so kind of you to share with us. You are always so helpful. We have printed it for our files. We will keep you in our thoughts and prayers.

    John and Rosalie Waldon Have laughter in your voice and love in your heart!. Sent from my iPad

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  2. Hey there Gil, How are you faring Gil with the NOH parasite. Knowing specifics helps me pray more effectively. Thinking of you😍😍Blessings, Dolly Sent from my iPhone

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