Ten-Day Update: Getting Closer

It’s been about 10 days since Dr. Boyd turned on the DBS system that was installed in November. Incredibly, I’ve still got a persistent cough from that nasty flu that I picked up from Graham. So my enthusiasm is still a bit diluted.

However, I can report that today was one of the best days I’ve had in a while. My levodopa has been halved, Mirapex reduced by a third. The right side is now almost free of any dyskinesia, leg or arm. I continue to walk well, with normal gait, posture and swinging of the arms.

My theory on what those new dyskinesias represent: Having reduced the stimulus caused by surplus dopamine, my brain was still accustomed to behaving a certain way when presented with smaller amounts of dopamine. It took some time for that patterned response to resolve itself in the extrapyramidal circuits affected by the loss of dopaminergic cells in the substantia nigra.

Now the problem is more on my left side, the side that we did not address via surgery because it has been affected for only three years. The third drug I reduced, benztopine, is nasty stuff. Anticholinergics are terrifically effective for calming tremor, but legendary for their non-motor side effects, primarily cognitive (dulling) and digestive (constipation). I take only half a tab of the smallest tab once a day, and I was eager to drop it. Bad move. Yesterday and the day before, I saw tremor on the left side to rival what I used to have on the right. As the benztropine reestablishes itself in my brain, the left arm is calming down. I hate the stuff, but I also hate what it is masking so effectively.

We trucked the kids up to a young-onset-PD-group Christmas party in Moretown, Vermont. It was great to be with old friends, and a few new ones. And I’m not BS-ing when I say everyone looked good.

Looks like Charlie is signed up for a trial of the “pump,” an external device that pipes a dopaminergic gel from a tube directly into the small intestine. I’d rather not have to use that sort of device because of the risk of infection posed by a chronic break in the skin into an area as biologically active as the gut. A DBS system is entirely contained within the body, and poses less of a problem for exercise and fitness routines. But that’s just me.

Michael says New England (?) is going to host a young-onset meeting next year. I’m happy to help, so if you are reading this, Michael: I can’t take over the chapter leadership at this point, but I can back you up on planning and logistics for whatever you signed us up for! Call me and we can discuss it further (and if you aren’t reading, I’ll be in touch).