“ Doubt is the biggest scourge.”
31
After Surgery
Bernard Whitman
My neurologist began mentioning DBS to me in passing about three years after my initial Parkinson’ s diagnosis— saying it would be“ for some time down the road.” But he kept bringing it up during the year that followed. Finally, I asked him, almost off the cuff, when he thought I should seriously consider having the procedure.“ By the end of next year, for sure,” he told me. I was dumbfounded. It was a real wake-up call to hear I should be considering DBS so early in my disease. But the more research I did, the more I began to feel it was the right thing for me. Locking in its benefits while I was in a better state made much more sense than waiting till my condition wasn’ t as good.
“ Brain surgery” is just a tiny fraction of DBS. I felt great right after the surgery, but six weeks later I got a staph infection and had to have everything removed— the left-brain lead, the battery— and I definitely did not expect that. It took six or eight weeks for the re-implantation; each side was done separately, so it was months before it was completed. Despite my research, I felt woefully unprepared for how bad I felt after the implantation procedures.
What’ s sorely lacking generally in Parkinson’ s care is having a support team who work with each other and with you from start to finish. My recovery has been very mixed, to be honest. The programming has been a bit of a nightmare for me, and I felt overstimulated at first. I have gait freeze and initially DBS made it much worse. We spent months working on program changes and frequency decreases, and it is much better now. My sleep is better, and so is my dystonia.
The greatest challenge now is consistency. It was just a couple of months ago that I would stand on
For Bernard Whitman, left, with his husband and care partner Constantin Mitides, having the right support team in place for DBS is critical.
the side of the street and wonder how on earth I’ d get across it. I still have those moments— the recovery is not linear but circuitous.
I believe in certainty. Doubt is the biggest scourge we face, but despite the problems, I know— have always been certain— that I made the right choice to have DBS. On many measures, I am now better than I was pre-DBS, but I want to be way ahead of where I was before. I want to be limitless, not limited!