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Deep Brain Stimulation and Parkinson’ s
“ DBS— like Parkinson’ s itself— can be so different for women.”
Donna Rajkovic
It was at least five years from the first symptoms to my Parkinson’ s diagnosis in 2012. At that time, accessing information on Parkinson’ s in my community was challenging, leaving me feeling isolated. As my PD advanced and my body couldn’ t tolerate additional medications, my doctor proposed DBS. Initially, my reaction was a definite“ no.” The thought of brain surgery seemed too much; I was still young and not ready for such a step. However, as time went on and my symptoms grew harder and harder to manage, I started to entertain the idea more seriously.
There were no women locally who I could turn to and discuss how Parkinson’ s affects us as women, let alone as women who have had DBS. DBS— like Parkinson’ s itself— can be so different for women due to our physical makeup and the role of hormones. Yet, my desire to be around for my family pushed me towards readiness. As my symptoms, including frequent falls, freezing, and dyskinesia, became more difficult to deal with, I increasingly relied on my husband’ s help.
My initial DBS surgery in 2020, was during the COVID pandemic. Recovery was difficult because of chronic headaches, dizziness, and impaired spatial awareness. Programming the device was also difficult as the settings wouldn’ t hold after sessions. Despite a year and a half of investigations into the placement of the leads, the doctors initially found no issues. A second opinion revealed that the leads were misplaced. One of the leads was off by two millimeters— a small distance that can have significant implications in brain surgery, like the distance between Florida and California. My new medical team performed a corrective DBS surgery in
Despite initial challenges with the placement of her leads for DBS, Donna Rajkovic experienced significant improvement in her dystonia and dyskinesia symptoms.
2023. This adjustment has significantly improved my dystonia and dyskinesia symptoms. My movements are smoother, I’ m more comfortable, and I feel that I am more balanced.
When thinking about DBS, I feel it’ s important, especially for women, to share our stories. This can be hard— women, and especially mothers, are supposed to take care of everyone else first. So, we need to advocate for ourselves and for each other.