Taking control of my DBS settings caused unexpected fear

I was very lucky to have a relationship with a truly remarkable neurologist for more than 12 years. I started seeing her right after I was diagnosed with early-onset Parkinson’s disease. The first time I met her, she told me, “You’re too young; you have too much to do. We’re going to make you feel a whole lot better.” I was 36 and terrified that my life was over. But her calm confidence gave me hope.

Over the years, I met with her three or four times a year, and she guided me through finding the right combination of meds and activity to manage my symptoms. As time went on, she helped me through the deep brain stimulation (DBS) process, from the testing required to be approved for the surgery, to helping me choose the right surgeon to perform the implantation, to being the one to “turn me on” a month after surgery.

It was pretty heartbreaking when I found out she was moving out of state and I would no longer have her as my doctor. But after a little drama — my first new doctor also left her practice after I saw her for a single appointment — I found a “new, new” doctor.

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I met with my new, new doctor over the summer, and I like her a lot. She brings a whole new perspective to my treatment. One of the biggest changes in working with my new doctor is that she’s willing to let me adjust my DBS settings on my own. If you’re not familiar with DBS, it is a surgical option for Parkinson’s disease that delivers electrical stimulation to specific parts of your brain, and it can be adjusted to give patients the most relief from their symptoms.

Your doctor uses an iPad and Bluetooth to check the devices and adjust the many settings. I also have a separate phone app that connects to the devices in my chest to view my settings, check battery life, and turn the stimulation off for certain medical procedures like MRIs or surgery.

One major issue I’ve had with my Parkinson’s in the last year or so is finding the right combination of DBS settings and medication that would improve my gait and my speaking at the same time. No matter what we tried, I felt like I could either walk or talk, but not both. When my settings were optimized for walking, my speech was often very slurred and soft, making me hard to understand. When we got my speech under control, I felt unstable and afraid of falling.

At my first appointment with my new doctor, we tried a few things, and she gave me two new DBS programming options. One was called “walking” and the other “speaking.” Through my remote control, I can see which program is running and change back and forth between them, which is awesome. And it terrifies the heck out of me, which is something I didn’t expect.

The day after my appointment, I felt really off, which happens sometimes. My tremor was intense, and I couldn’t type. I didn’t seem to have any improvement in my walking or talking, and overall felt crummy. I sent my doctor a note and told her I was going back to the settings I had walked into the appointment with. And they’ve stayed there ever since.

I’m kind of disappointed — and frankly surprised — in myself for not taking advantage of this new freedom. But seven years after my DBS surgery, I’m suddenly a little intimidated by changing my own settings. I look at how frustrated I get when Netflix or HBO changes its interface. I don’t want to swear and punch buttons on my DBS and screw something up. I know it’s an irrational fear. There are safeguards in place to prevent me from doing something bad, and as I did earlier this summer, I can always go back to my previous settings.

I have tried to be bold in my fight against Parkinson’s and try new things in pursuit of living better, and I’m sure I’ll get used to being in charge of my own settings. But for now, I have to admit I’m a little bit scared, and more comfortable sticking with what I know. I see my doctor next week, and I look forward to getting some reassurance from her.

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.