It’s on, kinda…
When Monet got blurry vision, he gave the world Impressionism. When I get blurry vision, all I get is nausea.
Today, Monday, January 8, 2024 my DBS device was switched on. Is it magical? Yes and no. Are symptoms reduced? For now, not a ton. Will it get better? Yes.
We spent a solid two hours with Dr. Kassavetis from UofU and with Claire Duffy from Boston Scientific working to calibrate my DBS device. We need to find the spot where the frequency and amplitude of the signals hits a sweet spot of maximum symptom alleviation and minimal/few side effects. Because we are talking about brains, it involves a lot of unknowns - drawing a map through wilderness until we get to the part where we cannot go further because ‘here there be dragons.’
The dragons in this case are the side effects - which for me seem to include cramping, light headedness and just enough problem focusing my eyes to induce nausea. My DBS device includes 2 leads (one for each side of my brain). Each lead includes 4 spots where signals originate. The middle 2 of those spots each include 3 directions in which they can send signals. The top and bottom spots send signals in the full 360 degrees. We tested each spot on each lead, so there was a lot of “how does this feel’? How about now? For those of you who have corrective lenses, it’s very much like that annoying device that the eye doctor brings out and asks over and over again “which is better, A or B”? Only it’s direct into your brain and it’s weirder and instead of choosing between A & B there’s the choice of ‘do I feel better or worse? Do I have tingling, numbness, cramping, light headedness, nausea, etc.’
The good news is that the thing works. We hit on a couple of settings that stopped my tremors - which I have to say was a welcome sensation. There’s definitely a feedback loop of tense/tremor-y body that leads to a tense and touchy frame of mind. While I do work to uncouple those things, when the tremors went away, my brain could let go of that constant monitoring, resulting in a sense of mental relaxation that I have not had in a while.
The bad news is that we’re still talking about a device in my brain, which means we need to proceed with a sense of caution. So the DBS device is currently set to deliver 0.5 milliamps to each side of my brain (I forget the frequency….), while the level at which I saw clear symptom relief was a bit higher than that (~1.5 milliamps). The reasons for that are the fact that having a device in my brain means caution is good and also to start to align medication levels with the new reality of having a device in my brain. Since over medicating is bad (see negative side effects, above, along with dyskinesia), we want to avoid big swings between over and under—stimulation/medication.
The good news is that I have some room to experiment with mixing the DBS with medication with my life over the next few weeks before going back in to see Dr. Kassavetis for further refinement on February 6.
As always with a complex syndrome like Parkinson’s, along with any answers there continue to be many unknowns. What we can say definitively is that the leads are well placed and working correctly. Once we know more about how I respond to the stimulation, I should see improved quality of life and a reduction in my medication.
Finally, within this maelstrom of symptoms that is Parkinson’s, I have a point to aim for, a potential path to a place that is calmer and more predictable. From where I’m standing right now that feels like freedom - if not the full freedom of youth, then at least the freedom of a decade ago, when the toughest medical question I had to answer was “which looks better, A or B?”