Life Without Meds, part 2

Over the 11-plus years I’ve had Parkinson’s, it’s been easy for me to self-administer meds on schedule. I do it currently six times every day, at the same times (more or less). I rarely miss a beat, and that’s probably one reason why I’m doing so well overall.

Yesterday’s experiment was a reminder of how important those routines are. I had expected a friend to stop by the house late in the afternoon, so I postponed my usual dose #3, normally taken around 1:30 p.m. However, Christine (a trained physical therapist who was going to administer the UPDRS test for the video) wasn’t able to come over as planned (her loss — she missed the Girl Scouts troop making gingerbread houses!).

When I took the postponed load at 4:30 pm, I had effectively missed a dose, and it was pretty obvious. The most immediate problem was a steady stiffening of the muscles throughout my body, especially upper back and neck. Right leg dragged, and the tremor gradually emerged, affecting both sides and leaving me increasingly unable to use my hands.

One interesting bit of weirdness: my sense of time was affected. I had really no sense of time passing as the med levels in my body drooped.

These problems started to recede about an hour after taking the pills, but I was never quite right for the rest of the day. The tremor, in particular the “inner” tremor that’s so hard to describe, abated but never fully went away until this morning.

Approaching the date for the DBS surgery, one of my trepidations is about how they will possibly be able to keep me still for long enough to do IV insertion, MRI work or even the DBS implantation without my causingharm to myself or others. The tremor was unbearable after missing one dose by three hours. I can’t imagine what I will be like after a cold-turkey withdrawal starting at some point the night before — roughly 12 hours before the procedure begins.

That would probably be the best time to shoot video.