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

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.

Operation "Deep Brain" is a "GO"

After a full year of prodding from neurologists, problems with meds, fear, loathing, research, hope, and 9 evaluation appointments, I have been offered the opportunity to have a Deep Brain Stimulation system implanted.  With the blessings of my parents, my children, and Mrs. Fading Angler, I have decided to accept the offer.  The image at the right should give you an idea of what's involved in the procedure, and perhaps why it took me so long to make up my mind.

The procedure is scheduled for late April at the Mayo Clinic in Rochester, Minnesota.  I am fortunate to live only about 3 hours away from Mayo, as they are rated by some as the best neurosurgery center in the nation.

Lots to do between now and then.  But first, I'm going to put my boots in some trout streams and annoy some trout this weekend.  Check Instagram for photos.  

Thinking Deep

I'm not a deep person.  My emotions and thoughts tend to run close to the surface.  I'm so driven to gather and assimilate data and connect facts that I miss the opportunity to make deeper connections.  Except with math and physics.  But that's a completely different and nerdy tale that would scare real people away.  So I'll let it go... I guess.  Classical literature also escapes me, though I was a fan of "Deep Thoughts with Jack Handey" on Saturday Night Live.  Mr. Handey even had some thoughts about his Grandpa going fishing, but the ending just wasn't the kind of thing I wanted to risk including here.  Google at your leisure.

I even consider myself to be a shallow fisherman.  It's still unbelievably rewarding watching a trout swipe a floating dry fly, even if it misses.  Going under the surface requires a whole new set of skills, which sounds like work.  Do I really want to work when I'm fishing?  Also being male, I'm not exactly predisposed to being a deep thinker.  Scratch, scratch.  Grunt.  Ooo, shiny!

Lately I've been faced with some challenges and choices that have required me to think deep.  Those of you with degrees in English or Journalism might be twitching and barely suppressing the urge to attack with a red pen.  You might be thinking, "You idiot.  You should have written 'required me to think deeply.'"  And you would be correct, yet wrong.  The grammar police might issue a ticket, but I'd convince the judge to dismiss the charges, kinda like that speeding where I play-acted as my own attorney.  Instead of thinking deeply, I've been considering Deep Brain Stimulation, a surgical therapy for Parkinson's Disease.

Here's the ten-thousand foot overview of Deep Brain Stimulation: your head gets locked into a "halo" to make sure you can't move while a neurosurgeon drills a hole in your skull and threads some electrodes down into a targeted region deep in your brain.  These electrodes are then connected to a small device that gets implanted in your chest.   The device applies an electrical signal intended to disrupt a malfunctioning part of the brain that contributes to the muscle rigidity, slowness, and tremors of PD.

Then there's the terrifying bit: most of the surgeries are done with the patient conscious and aware.   The final placement of the electrodes usually involves patient participation, with a test signal being applied as the surgeon moves the leads a fraction of a millimeter at a time.  I have avoided going to the dentist for more than 20 years simply because I can't face the thought of having a tooth drilled.  My skull?  I've cried when discussing this with neurologists.

There are also non-trivial risks associated with the surgery.  Some statistics show a 25% chance of significant "adverse events" during or immediately following surgery.  2% chance of stroke that causes permanent damage or death.  I'll stop the risk analysis here.

Why consider doing this?  As I sit in front of my Macbook, my neck and upper back throb in pain.  Since my meds have worn off for the day, my typing rate is reduced to maybe a quarter of my usual speed.  It would be nice to have some balance again, and not limp around.

Fear has been eating at my energy and self-control.  One of the absolute worst problems that Parkinson's Disease has brought me has nothing to do with movement.  Loss of dopamine has sometimes paralyzed me with anxiety, and that can lead to severe mood problems.  Getting angry with yourself because you see how it affects your family just adds fuel to the fire.  I'm sometimes able to find my way out of this mental maze, but not before accumulating some serious shame baggage.

I arrived at the conclusion that we (Mrs. Fading Angler and I) are going to at least learn whether or not I qualify as a candidate for DBS therapy.  I've had some symptoms that might disqualify me, and if so, I can dismiss the risks, anxiety, and decisions.  For now, I need to go fishing.  I'll be spending the next few mornings and evenings chasing brookies and browns.  Maybe some trout therapy will loosen my knotted psyche.

Safe weekend and tight lines, folks.  I'll be fishing on top.

Epilogue: I have a "no whining" policy for myself here on The Fading Angler, and it looks in retrospect like I came perilously close to violating said policy.  Here's my attempt to make it right without rewriting history: the weekend of fishing helped.