Wednesday, June 21, 2017

Hello, Square One

It's been 6 weeks since the last pieces of my Deep Brain Stimulation (DBS) system were implanted, and a day less than that since it was activated.  Results were initially very encouraging: for most of the next week, my usually rigid right side was much more normal!  The "old man shuffle" caused by an uncooperative right leg was nowhere to be seen when I got up in the morning.  My right arm would swing when I walked.  Tremors were nowhere to be seen.  Best of all, the debilitating, painful dystonia in my neck was gone.

Top View

Wednesday, May 31, 2017

Parkinson's and Angling Updates

It's a great feeling to know that there are people out there who are looking for an update on my health and progress.  So, an update is obviously in order, now that I've had the neurostimulator running for three weeks.  I'm very happy to report that my incisions from the first procedure are almost fully healed.  I still get mild headaches later in the afternoon, which I assume are related to rebuilding bone in my skull.  Nothing the occasional Tylenol can't handle.

I'm also very happy to report that there are no signs of infection anywhere.  The neurostimulator was implanted just south of the left collarbone, and it's deep, unlike my brother's pacemaker.  Yet I have full range of motion and only mild irritation from the incision site.  Speaking of irritation, I don't think anyone will be surprised to read that my scalp itches constantly, with some areas that are still partially numb.

Monday, May 22, 2017

Not the Same

Anyone who chases fish is bound to encounter a certain quote on the Internet, sooner or later.  The original source is reported to be the Greek philosopher Heraclitus.  Being something of an introvert, it appears that he didn't go to great lengths to publish or popularize his thoughts.  Others, such as Plato and Plutarch quoted, or perhaps paraphrased his thoughts. Time and translation have taken these thoughts and put them through a game of "Telephone."  You whisper "The cheese is old and moldy" into your neighbor's ear and then it proceeds down the line until "Purple Monkey Dishwasher" emerges from the lips of the 20th person.  Keeping that in mind, here's the modern version:
No man ever steps in the same river twice, for it's not the same river and he's not the same man.

Sunday, May 14, 2017

Performance Testing and Tuning for the Human Brain

The neurostimulator (aka implanted pulse generator)
and lead extensions were implanted and
connected last week to the leads previously
implanted two weeks ago.
One of my occupational passions for the past 20 years has been to improve the performance of large computer systems using data-driven scientific methods.   "Scientific" means measuring stuff.  It always pains me to quote "Mythbusters" but in this case they have a point: "Remember kids, the only difference between screwing around and science is writing it down."  Whether you're testing the stability of a system, how fast it can complete an individual task, or how many tasks it can process in an hour, you have to be able to describe how the system behaves before AND after you make a change. You need DATA.  "Otherwise," said one of my mentors, "we might as well just go play football."  Indeed.

Thursday, May 4, 2017

Play-by-Play Replay of Awake Neurosurgery

When we last left our "hero," he was facing a full morning of surgery to have a pair of wire leads implanted, one in each hemisphere of the brain.  Later, these wires will be connected to a pulse generator device to induce "Deep Brain Stimulation therapy" for Parkinson's Disease.  Our story resumes Tuesday evening before surgery.

Before going any further, I have to insert a disclaimer.  I usually try to add some craftsmanship to my writing.  Unfortunately, being a recovering perfectionist, I don't think I'll ever get this one "good enough" by my standards.  So, in the interest of getting it done and out, I'm going to settle for whatever gets written.  There won't be any "slow hand" artistry today.  "Just the facts, ma'am."  Rough Draft.  Bring your red pen and draw on the screen.

And a warning: I'm brutally candid.  It's medical stuff and I'm not shy or reserved.  You get the truth, as much of it as I can remember.  Also see the "unapologetically verbose" advisory at the right.

Tuesday, April 25, 2017

One Down, Two to Go

You'll forgive me for again invoking "that damned movie" as it is sometimes called by a few.  Toward the end of the cinematic version of 'A River Runs Through It," Norman's younger brother Paul lands a fish after a very dramatic swim with his bamboo rod held high.  He is congratulated and complimented by his father.  In the afterglow of the moment, Paul says something along the lines of, "I just need three more years before I can think like a fish!"

The course of the movie branches away from the written story at this point.  I have no complaints about how the screenplay was written or directed, and it makes perfect sense that it took the course it did.  Yet something was missed at that fork, something that came from the rocks and echoes from the water.

A river, though, has so many things to say that it is hard to know what it says to each of us.  As we were packing our tackle and fish in the car, Paul repeated, "Just give me three more years."
Thirteen months ago, I concluded one of my essays with those words.  I hoped for just a few more years of fishing.  It seems like a reasonable request for someone with a progressive, degenerative neurological condition, right?  I adopted it as a slogan, and I'm clinging, refusing to let it go.  Not forever, but something more than tomorrow, next week, or next month would be nice.  Two more yearswould be great.

I've been asked the questions more than a few times over the past week: Any second thoughts? Are you nervous?  And I've had to pause before answering, confused.  I feel like I should be nervous or feel some form of fear.  Not long ago, fear of this procedure filled a space inside me.  That space is now empty vacuum.   I've even searched for anxiety regarding those low probability, unspeakable outcomes.  If it's there, it's an elusive beast swimming invisibly through the shaded places.

The fly is cast and I'm content to watch it drift.

See you downriver.


Wednesday, April 12, 2017 I need another hole in the head

By now, we’ve all learned that life brings us the terrible and the beautiful, often by the same whim.  Like most, I can speak with authority about beautiful things ended terribly, and terrible things that have bloomed into beauty I’d never imagined.  Better minds than mine have explored this dichotomy, so I’ll not embarrass myself trying.

Fate, God, the Universe, or insert-your-own-belief-system-label-here handed me a metaphorical coin about ten years ago.  At first, I could not decode the inscriptions.  A few years went by and I learned to read the writing: Congratulations, you’ve been selected to experience Young Onset Parkinson’s Disease.  Looking at my metaphorical coin, I could clearly see that one side depicted pain and tragedy.  The other side was still indistinct, but I could see gratitude around the edges.