How I get the most out of my deep brain stimulator
Routine evaluations and adjustments provide me the best results
Almost daily I’m reminded of how fortunate I am to have had deep brain stimulation (DBS) surgery to treat my Parkinson’s disease.
I was diagnosed with Parkinson’s in 2013, at the age of 36. In the fall of 2019, I had DBS surgery. My life has been unquestionably better since then, but DBS isn’t a cure. Rather, it’s the start of a journey.
I don’t know what I thought my life would look like 12 years after being diagnosed, but I do know that I imagined it’d be much worse than it’s turned out to be. Because May is my birthday month, I’m thinking about my 40th birthday, when I threw a huge, fancy party. In retrospect, I think I did that because I didn’t expect to make it to 50. Well, here I am at 48, doing better than I was at 40. And I credit DBS for much of that.
Managing my disease after DBS
Choosing to have DBS surgery can be a tough decision. Everyone has different experiences with it. It’s important to remember that DBS isn’t just a surgical procedure; patients also need follow-up care and ongoing adjustments to get the most out of it.
Most people I’ve met who’ve had DBS have experienced at least some relief. I think one crucial factor is frequently seeing a movement disorder specialist for ongoing evaluation and adjustment.
The DBS system has a lot that can be adjusted. Mine is from Medtronic. Multiple contact points in my brain can be used, and the voltage and amperage can be adjusted. My medical team can even “shape” the arc of stimulation to focus it where it’s needed without causing other side effects. Different brands have similar features.
These seemingly endless possibilities for adjustment are great, but it doesn’t mean that adjustments always go smoothly. I tend to get my DBS “tweaked” two or three times a year when I see my neurologist. Typically, I’ll walk up and down a hallway while trying various setting combinations until my team is happy with how my gait looks and I’m happy with how I feel. At the end of the appointment, they’ll always remind me to call in a few days once my new settings “settle in.”
After an adjustment, I’m usually pretty tired for the rest of the day, and then the the next morning, I’m better than ever. But sometimes I’m not. One time last summer at a Friday appointment, they made a lot of adjustments that got my walking and speech crisp. I felt so good that my husband and I stopped for an outdoor lunch to enjoy the beautiful day.
By that night, though, I wasn’t feeling so hot. I was shaky and exhausted and wanted to shut down. My speech was slurred. I was a mess. I called my doctor, who squeezed me in the following Tuesday and switched me back to my old settings. I instantly felt better.
It was an important reminder that DBS is not a Ronco Rotisserie: You don’t “set it and forget it.” It’s also a valuable lesson about keeping communication open with your doctors. I know I’m lucky to have great doctors nearby, but for some, getting back to the office to resolve an urgent issue isn’t always possible.
DBS isn’t magic. It involves ongoing dialogue with your medical team. As your symptoms change, so should your settings.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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