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

Five or six days passed, and the old man shuffle crept back in.  The right arm also started to tighten up.  I was directed by my Mayo neurologist to leave the DBS settings alone for the first two weeks, to give my brain a chance to get used to the new electrical input.  The two-week mark couldn't come fast enough.  I was permitted to increase the signal voltage by 0.1 volts per day, starting at my initial level of 1.3 V.  When I reached 1.9 V on my right side, thing began improving again.  When I got to 2.1 V, the ceiling currently allowed by my neurologist, things were even better.  Alas, within four days, the benefits again started to fade.  Over the weeks, I've nearly returned to where I started before the surgeries.  I am happy to report that my worst Parkinson's Disease symptom, the pain in my neck, is still much improved.  That problem alone had been interfering with my life and my ability to work.  So, regardless of everything else that's frustrating me now, that is a wonderful thing!

Left side, above my ear

I mentioned frustration.  Let me explain.

I have this $25,000 device implanted in my body.  There are literally millions of combinations of setting that can be tried, and I've had a glimpse of the possible improvement that awaits me.  My next DBS appointment at the Mayo isn't until the middle of August.  I've tried twice to get an earlier appointment with no success.  This is in stark contrast to how quickly I was able to get appointments to be evaluated for DBS candidacy.  So, despite all of the possibilities in front of me, I'm stuck for two more months.  No, I'm not stuck; I'm regressing.  My brain has developed a tolerance to the current DBS setting and my old symptoms are back, almost at full strength.  I felt like Superman on my first angling trip, about 8 days after DBS system was activated.  I walked confidently through rocky creeks with no thought to using my wading staff.  Two weekends ago, I lost my balance and fell in a creek.  Yesterday, just walking around the house, I was shuffling and stumbling.  And my neck was starting to hurt at the end of my workday.  My right arm just hangs in mid-air.  I have to consciously put it back at my side after I do something with it.  There's a cost to this stiffness and rigidity:  even though I'm not consciously asking my muscles to do something, they're still burning energy as if they're being used.  This is exhausting.  By 4 o'clock in the afternoon, I'm so tired that I need a nap to be able to function.

Frustrating.

Cable running from behind my ear,
down the neck,
into my chest

Here's the latest: I came to the decision last night that there is one more neurostimulator parameter over which I have control: On/Off.  If this thing isn't doing me any good at night, there's no reason to be wasting the battery life.  So, I shut it off when I went to bed.  When I got up this morning, I can't really say whether the Old Man Shuffle was any worse, but I did notice something.  After walking about ten steps, a moderate tremor took over my right hand.  A few minutes later, I turned the neurostimulator back on.  3, 2, 1.  Poof!  Tremor disappeared.  Turning stimulation on again didn't make much, if any difference in my walking or arm swing, but it looks like it's keeping tremors at bay.  I'll take it!

Look ma, no stitches!

Other reports: My head incisions have completely healed and are barely visible, as seen above.  The external sutures on my chest have all fallen out, and there's only a little redness around that incision site.  There have been, knock on wood, no signs of any infection or other complications from the surgeries.  I consider myself very fortunate to fall into that particular statistical category.  I can feel some tightness in the wires running up my neck, but it's mildly bothersome at the worst.

I have no reason to believe that anything but good things are coming my way, once I can gte back into Mayo for new neurostimulator programming.  I'm very optimistic.  I'm just not very patient.  And I'm not an ideal patient, either.  I'm educated and opinionated.  I want to be in charge of my health, not a passive observer.  Time will tell whether or not the doctors at the Mayo are the right ones for me.  If not, I've already started exploring other options.  Life is too short for uncomfortable shoes or medical care that doesn't meet your needs.