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Deep Brain Stimulation and Parkinson’ s
“ Finding the right support team is my biggest challenge.”
Laurie P.
I was in my mid-40s when I got my Parkinson’ s diagnosis. I’ m a single parent, and I had to tell my 13-year-old son about it. I barely knew about Parkinson’ s myself and what the future might look like, so I couldn’ t go into much detail with him. Maybe it was a coping mechanism, but we kind of acted like it wasn’ t really happening.
It’ s been 17 years since then and I’ m living my life. I work in a highly competitive entertainment field— where having Parkinson’ s would be seen as a weakness— so for years I kept working at a fast pace, but I began to feel that the stress would kill me if I didn’ t change my course. I moved back to my hometown in the middle of COVID because I wanted to have family support. I still work in entertainment full-time, but under my own terms. I travel, go to concerts, date— and unless I’ m going through an off period, you probably wouldn’ t notice my PD.
DBS is something I’ ve thought about for a long time, but my family and friends didn’ t encourage me:“ What are you talking about? You don’ t need that— not yet.” It made me feel more scared and less willing to have the procedure. And I’ m a lap swimmer, which is very important to me; I’ m worried that the device can get in the way of swimming or be harmed by the vigorous movement.
But finding the right support team is my biggest challenge— those people who will work together to map out a plan of care that is designed for me. I’ ve talked with device reps, neurologists and surgeons and no one I’ ve spoken to seems aware of the issues for swimming, nor have they brought up the not-so-fun complications that can follow
Finding the right team of people who will work together to map out a plan of care for DBS can be difficult, says Laurie P.
DBS. Some neurologists say they will only treat me if I have the DBS.
But I’ ve found a new doctor who told me that there were several different options available to me so that I can manage my symptoms without DBS, and I’ m trying these now. I truly believe that in the next few years, MJFF research and breakthroughs around the world will provide alternatives to an invasive procedure like DBS. So, at this time, I am not considering it for myself.