My deep brain stimulator works overtime to keep symptoms at bay

Note: This column describes the author’s own experiences with deep brain stimulation. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

When I was diagnosed with Parkinson’s disease in 2015, things weren’t too bad. I had a slight tremor and some aches and pains, but overall, I could cope.

As time passed, though, my tremor became quite aggressive, especially at bedtime. Sometimes I’d lie in bed trying to think of a solution, but the best idea I could come up with was to amputate my arms. I was desperate.

Fortunately, I was a candidate for deep brain stimulation (DBS), and in 2021, I had the surgery, which solved my tremor issues. I’m not exaggerating when I say that DBS gave me back my life. Parkinson’s, however, was determined to progress. It’s like my body realized it wasn’t allowed to tremor anymore, so it tried other things — such as reacting to my medication with dyskinesia, changing my voice to sound gravelly, and making me walk super-slowly or lose my balance.

Last December, I had my DBS settings adjusted. That helped to better balance my voice and speech pattern a bit, and I could still move and was relatively tremor-free. But during the past couple months, I’ve felt myself slowing down, moving more awkwardly, and sometimes walking backward — you know, all those party tricks that are in the Parkinson’s treat bag. They were mine, all mine!

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Situational recalibration

I returned to my neurologist last week and explained that, while I’ve slowed down, my Parkinson’s has sped up. She had a solution for me: adjust two settings on my deep brain stimulator. One would let me move more easily, while the other would make it easier for me to speak fluidly and not struggle as much to get my words out. (I have to choose one setting or the other, depending on the situation.)

I instantly fantasized about how I’d be able to have better conversations. I’d be funnier and sound more intelligent. Also, with the new setting for movement, I was sure I’d be able to move more quickly and have better balance. I’d probably be able to run faster, too, just in time to start training for this year’s road race. This change was going to be great!

To perform this recalibration, she’d first need to turn off the device. That hadn’t happened since the last time I had a mammogram. Even then, it was turned off for only about five seconds. This time, it’d have to be off for a few minutes.

Have you ever seen that guy on social media who’s had DBS? He shows the camera that his remote is on, and then he turns it off. In seconds, you can see his tremor build to a wild, uncontrollable thing. I’ve only watched it once, which was enough for me.

That’s what happened to me when I was “turned off.” First I could feel the tremor building in my legs. Then it moved up my body, causing my arms to flail and my head to bob and sway at the speed of light. The doctor held my hands down and repeatedly apologized (we’re Canadians, after all) while the nurse entered the new setting. It took about three minutes to do. It certainly felt much longer, and I wondered if that was what I’d be like without DBS.

I’ve since had the chance to try both of the new settings. For everyday activities, I choose the movement setting. Am I much different from before the adjustment? Not really. I probably won’t be winning any races in the near future.

As I switched to the voice setting on a quiet Sunday afternoon, I felt like I’d unleashed my tongue. Talking felt looser, and it was much easier to get my words out. OK, maybe I’m no funnier than I was before, but it’s so much easier to have a conversation with that setting. Yes, my tremor gets stronger, but that’s something we can manage.

I remain optimistic and deeply grateful for deep brain stimulation, especially now that I know how hard it’s working to control my tremor.

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.