30 Days of Parkinson’s: DBS Surgery Was a Game-changer

Photo courtesy of Rob Warner

Day 25 of 30

This is Rob Warner’s story:

I was 33 with a wife and four kids when I was diagnosed with Parkinson’s. In college, I had gained a lot of weight due to inactivity so, after graduation, I made the goal to climb Mt. Whitney. After that, I still wanted to lose weight, so I started doing sprint and Olympic-distance triathlons. By the time of my diagnosis, I’d probably done 12 triathlons.

For a while, my symptoms were held in check enough for me to continue triathlons. As my symptoms progressed, I got dystonia — painful twisting of muscles — in my leg, which got worse the harder I exercised. My physical therapist taught me some tricks, like skipping or running backward, to help reset my brain.

Eventually, I was caught in a vicious cycle. When I exercised at an intensity I knew would help ease my Parkinson’s symptoms, the dystonia would get worse. That led me to ask my neurologist about deep brain stimulation (DBS) surgery. I had DBS in November 2015, and it was a game-changer.

Now I take about seven pills a day versus the 20 I took before the operation. Best of all, it halted my dystonia. For some reason, the operation made it more difficult to swim and run, so I do only one short triathlon per year. But it doesn’t matter because I LOVE the bike! Today I walk better, my speech is less slurred, and my typing is faster. This helps a lot in my job as a flight test engineer.

My family is supportive and helpful. My kids were excited to learn that I can get in free to any national park with my disability placard. They’ve supported me in my exercise and in fundraising for Parkinson’s. 

I wish I’d learned much earlier about the potential benefits of DBS. I know there’s a stigma of it being brain surgery, but as long as you do your research and find a doctor who has done a lot of them, it truly isn’t as bad or scary as you might think. That’s not to say it’s a cure. I still have very bad days. However, I wouldn’t change my decision to have the surgery in a million years!

Parkinson’s News Today’s 30 Days of Parkinson’s campaign will publish one story per day for Parkinson’s Awareness Month in April. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPAR, or go here to see the full series.