DBS Journal: It’s Time for Round 2

I’m trying to figure out the best way to get relief on my left side, the side that we did not stimulate. All roads keep leading back to doing a second surgery.

My right side is doing pretty well overall, with increasingly frequent breakthrough tremors happening during off periods. But the left side now feels like my right side did before DBS.

Mornings used to be my best time of day, probably because of the amantadine (it has a stimulating effect, so I take it morning and noon so it won’t interfere with sleep). The left side tremor reappears more quickly during the wear-off period, and it’s far more intense. The stiffness and rigidity has made a dramatic reappearance.

It seems as if the Parkinson’s is fighting back against the stimulator, that it is adapting to the device as if it were one of those antibiotic-resistant bacteria. I never expected a cure or a slowdown, but this relentless progression is a little worrisome. Maybe it’s stress.

I’ll have a stimulator adjustment in about a month, which ought to bring some relief to te right side. We will probably run through the medication options, too. But I’ve been through the mill with meds, though, and I don’t like the way they affect my thinking (I’m already borderline with OCD issues at current dose of mirapex) or my body (the dyskinesias that accompany levodopa/carbidopa).

My second session of device tuning opened with Dr. Boyd asking when I would get the left side done. My last office consult with Dr. Coffey opened with him asking what it would take for me to get the left side done. With the right side, I just knew when it was time. Now I know it’s time for the left.