DBS Programming

The One Where We Flip The Switch!

It was a lovely Pre-Vernal Equinox day (we don’t have Spring in Maine, just “mud season”—owing to the fact that most of us have “dooryards” instead of driveways, which evolve into varied depths of muck as the weather warms until Summer, the sweetest reward for surviving another Maine winter). It was the first day above freezing in a good solid month, and an amazing day to turn on the DBS stimulator and commence the first day of the rest of my life…

Above, we are arriving at my MDS (Movement Disorder Specialist)’s office. He had advised me to stay on my meds for today, so this is with the assist of carbidopa/levadopa.

Once inside, more waiting…

And then the varied stages of programming…

Concluding with I responded so well to stimulation that I needed to return the next day with no meds to try again.

OK, so another hour and a half drive home and back the next day. No biggie, right?

Except for the snowstorm predicted for the exact time we were to be on the road, which prompted a conversation that went something like this….

“Julie, we can just re…”

“No, we’re going.”

“I’m sure I could find…”

“We’re Mainers. We drive. We have All Wheel Drive. We’re going.”

And that was that.

We allowed an hour extra time for travel, packed a bag in the event that we needed to crash at a relative’s house for the night, and headed out into the snow.

We chose to take the most direct and traveled path to pick up the interstate in Augusta, which was fine until we ran into this scene, which delayed us and threatened to make us late for the appointment.

But thanks to the random, heroic young man (18-20ish) in the gray sweatshirt who took command of the scene well before the cop arrived, we were on our way again, without incident for the rest of the way.

First day of the rest of my life, take two.

Dr. Stamey was on call, so the first thing to ascertain was if he was still in the building to keep the appointment, which he was thankfully. He is a guitarist in his free time and we have hit it off splendidly as a result (as I am a drummer) and we often talk more about music than PD at my regular check up appointments. I showed him my post from the previous day and he had a good chuckle, incredulous that I had not ever seen “This Is Spinal Tap” in its entirety.

This lightened the mood and we got on with the business of programming the DBS

And then, the moment I have been dreaming about for months…

Or, as my clever sister commented on my post “0 to Disco”

Two weeks short of 7 years since diagnosis, I’m finally doing more that just “staying alive.”

I am humbled and so grateful