When I was diagnosed with Parkinson’s disease, my doctor directed me to a research study at OHSU, where I met Julie Carter. Julie is exceptional: sincere, calm and caring. When you are first diagnosed with Parkinson’s, you go through a lot of head trips trying to adjust, and I never felt like just another patient in an ocean of them. When my insurance changed, I immediately transferred to Julie. I’ve been at OHSU ever since, and I’ll never leave.
Over the years, we tried various drug regimens to help the movements and dyskinesia caused by my Parkinson’s. We had discussed deep brain stimulation (DBS) surgery, but she said that would be something to think about for the future. When we had exhausted our options, I asked if we had any more tricks in her bag, and that’s when she said it was time to consider DBS. I was excited, because I understood its potential, and when Julie—who I had so much faith in—gave it a thumb’s up, it was what I needed to hear.
Dr. Burchiel did the DBS surgery. He had come up with a new option at OHSU where they did DBS surgery while the patient was under general anesthesia. I was glad to be “asleep,” because I can’t imagine it being very comfortable if I were awake.
About a month after my surgery, I returned to OHSU to have the DBS turned on. It was fun: I asked if I was going to do a jig across the room. Well, I didn’t, but we soon found a setting that worked well. Everyone at the OHSU Brain Institute has been so helpful—the techs, schedulers and people like nurse coordinator Lisa Mann, who juggles all the balls behind the scenes and is quick to answer questions.
Ever since my DBS surgery, I’m not shaking any more. I still take some medication, but a whole lot less. Also, the medications I do take are more effective—I can go much longer between doses. Also, I can return to some hobbies: I play golf, and before DBS it wasn’t much fun. But now, I am looking forward to getting back out there.
All I can say to anyone thinking about DBS is this: It’s not a cure, but it’s the next best thing. Everyone may not have equal results, but for me, the results have been nothing short of miraculous. I love it. I wear my DBS with pride.