Time is on my side?

Quail are cute and fun to watch.

As I hit something close to the halfway point in my disability leave, it’s clear that the cadence of my days has changed. This surgery has allowed me to take the longest break from work that I’ve had in decades. I have the privilege of paid disability leave from a job I enjoy that I get to return to that pays me enough to support the home improvements that I want to do. So, despite some major life events (brain surgery and parental death), my stress levels are low and my time keeping skills have become shit.

I manage to mostly keep track of days in my head, though increasingly I have to double check that with my electronic devices. Mentally, I’m shifting from “Monday, Tuesday, Wednesday, etc.” to count the days before or after key events like “DBS turn on appointment on Monday, January 8” to “Funeral on Saturday, January 20”. For example, today is Sunday before the funeral so that makes its January 14, which also makes it NFL Wildcard Weekend and means tomorrow is MLK Day.

Winter, with the lengthening days and the turn of the year, is a good time to recover and reflect. Having succeeded in finally buying bird seed and filling the feeder, I can sit and watch the gajillions of birds each day, as they squabble and eat in all kinds of weather. They’re the backdrop for activities like feeding my sourdough starter (which is seriously complaining about the cold temps in my kitchen, but sorry - not even for you is the thermostat going above 68F), sending out birthday cards to friends and family, planning home and yard improvements, and (for some odd reason) developing an obsession with getting a new car (current favorite is the new Toyota RAV4 plug in hybrid).

One of the most profound shifts in my timekeeping in the past week has been in taking my Parkinson’s medications. Prior to DBS, I was on a schedule of meds of 3.5 to 4 hours. In and of itself, that’s not a Significant Life Problem, but it was often a pain in the ass. The main two things that that really annoyed me were first the fact that I didn’t ever wake up on my own - I woke up due to tremors - and second, the fact that I could never just get lost in a project. Many days would start with me taking meds at 5:30 or 6, waiting for a bit (ten minutes to an hour) for them to kick in. After a few calls with co-workers, I’d often start to dig in to a project around 8 or 9 - and if I forgot to mentally monitor my symptoms and keep track of time, which inevitably happened because trying to figure out symptom levels while trying to write about Process Observability or some other abstract, technical concept is beyond my mental capacity. Anyway - many a day I’d finally realize that I could hardly type any more and that I was late taking meds and that I’d HAVE to stop typing or writing for the next 10 to 90 minutes while meds kicked in again.  And do NOT get me started on sleeping in. Physically impossible.

But now that my DBS is on, and I’ve cranked it up to 1.5 milliAmps on the left side, I no longer need to measure time in increments of 3.5 to 4 hours. Even in this initial stage where we haven’t yet fully refined the stimulation, it’s changing the cadence of my days, alleviating the background stress of remembering when I last took meds and when it will be time to take them again and by the way, how much protein have I eaten today and when.

Y’all. I slept in until 7:15 this morning, woke up on my own, and was able to hang out in bed pondering my day, the snow, and why in the hell the NFL gave exclusive rights to Peacock+ for last night’s playoff game between Kansas City and Miami.

Obviously, my sense of time will always include some sort of medication tracking - that’s just the way it is now. But as I stated in my last post, I’m traveling back in time a bit to an easier mental state and daily protocol, a simpler medication regime that allows for some flexibility and forgetfulness that allows me to live my life and then take pills rather than the reverse.

There’s still room for symptom improvement via the DBS, which is exciting. I understand the need for a slow step up - brains are complicated. While science has sorted out a remarkable amount of knowledge about brains, it still feels like we only understand a small percentage of what is possible. So, we’ll continue to test each step before putting our full weight on it, a pause for breath between each step. But we’re inching forward, at least for now. Which is a significant change from the slow slide of the past seven years.