This week I saw the MDS for another round of Botox injections. As we waited for the syringes to be drawn, she asked if the latest tweak to my levodopa had helped. It hadn’t made enough of a difference to impress her, and she again suggested I’d be a good candidate for a pump that delivers carbidopa/levodopa to my small intestine. Her university currently has a few dozen enrollees in a pump study and she divulged that rashes and other skin complications continued to plague its participants.
“If you were my sister or my best friend and asked if you should try it, I’d tell you not yet,” she acknowledged, which wasn’t as upsetting as she seemed to expect, because I’d rather not get a pump any earlier than necessary.* My gastroenterologist has already indicated he thinks it will be necessary due to Crohn’s-related absorption issues, but the possibility of infusion site infection is worrisome due to immunosuppression.
At our next proper checkup, which I think is scheduled for early spring, we’re going to add a new medication to the mix, either entacapone or amantadine, to help extend ‘on’ time. This is often a necessary step before insurance will cover Rytary or Crexont, extended-release levodopa formulations that might allow us to reduce the number of pills I take each day.
All to say, there’s some reason to be optimistic that I’ll be feeling better by this time next year, and possibly even by the summer of 2026, which seemed like news worth reporting.
* The woman in the clip experiences a lot of dyskinesia and I don’t, so it’s not a great visual representation of why my doctor wants me to eventually switch to a pump. But it gives you some idea of how it works.
I’m making Crankenstein watch “Christmas in Connecticut” tonight, with “Remember the Night” on tap for this weekend. She benevolently tolerated “This Is Spinal Tap,” my favorite Rob Reiner film, a couple nights ago, but looked mildly confused by 90% of the details that cracked me up (like the mere flashing of the name ‘Mick Shrimpton’). In other words, things here are much the same as they usually are.