“ 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 !