During the year after my Deep Brain Stimulation (DBS) surgery for Parkinson's disease (PD), it seemed as though I was always being “adjusted.” I’ve had numerous follow-up appointments for medication and neurostimulator programming adjustments with Dr. Mindy Wiener, my neurologist in Denver, and Cindy, the Medtronic’s representative.
About a year after the surgery, Dr. Wiener completed the long-term disability paperwork for my chronic, progressive PD. I was devastated to be leaving what I considered to be my perfect job. After three DBS-related surgeries, my tremors lessened and overall I was less shaky. But I was greedy and wanted more.
My face was soggy at that appointment. We reminisced about the ten years since her diagnosis of my PD. Dr. Wiener repeated, “I’m so sorry,” “I’m so sorry.” She was the kind of person who seemed tough as steel but yet had a marshmallow heart. I told her that it wasn’t her fault, that she was doing everything possible. And she was, and she is.
A week later, Tom, my husband and I had an appointment for the neurostimulator adjustment. While waiting, I eavesdropped on parts of the conversation between what appeared to be a 60 something mother and her 40 something son. Her son parked himself one chair away from his mother. Perhaps he was afraid that his mother’s disorder was contagious. His mother struggled to get out of her chair and limped up to the nurse who addressed her by the name of Patty. She was at the neurology clinic for her first appointment.
Patty reminded me of all those Irish faces that surrounded me when I grew up in Kansas City with her fair, young-looking skin and soft blue eyes. However, I also saw something else in her face beyond her cultural background. Patty had a blank, mask-like expression. She had a noticeable tremor predominantly in her left arm and hand. The tremor looked like she was rolling a pill between her thumb and index finger. Patty folded her hands together in her lap trying to get them under control, but found it impossible to do so. I quietly asked Tom, what he thought was her diagnosis. We both simultaneously mouthed, “PD.” Our hearts melted for Patty and her son.
Cindy, the Medtronic’s representative arrived, and her role was to provide instruction to Dr. Wiener. Cindy, with her model-like good looks and thin six-foot frame, epitomized the sophisticated woman of corporate America, being employed with Medtronic, the manufacturer of the neurostimulator.
We remained in the main waiting room of the neurology department. I didn’t know if Kaiser still called them waiting rooms. Other medical clinics called them reception areas. It didn’t matter if one waited there all day, these rooms were now called reception areas.
The nurses everywhere used the same ploy, weighing their patients and tricking them into thinking that the appointment began. I always refused to hop on a scale that inflated my weight and deflated my height and ego. I worried that my chart might be stamped “patient refused to weigh” or “difficult.” The nurse took my blood pressure before it has a chance to rise because of the waiting. As a patient, I had the perception that I had started my appointment, even though I could be hours from actually seeing a doctor.
Our non-waiting ended after 45 minutes. Dr. Wiener, Cindy, Tom and I met in Dr. Wiener’s tiny neurology office, undecorated except for her certificate of residency in neurology from the New England Medical School Hospitals in Boston. We kept the office door open as it was hot and crowded, and most people were gone for the weekend.
Although I sat in a chair next to Tom during the appointment, I made sure that I was not at an angle that I could see his facial reactions. I didn’t want to see any grimacing as I was doing enough of that myself.
For this appointment, Dr. Weiner asked that I be “off” medication, meaning being in an unmedicated state. With my last dosage of PD medication nearly four hours ago, I was definitely “off.” When I was “off,” I felt like I was drunk even though I hadn’t drank alcohol. Being “off” was similar to inebriation in that there were different degrees of drunkenness, with .08 being the legal blood alcohol level limit in Colorado. After four hours without my PD meds, I felt as though I was .15.
And I was not a happy drunk, but a slow-moving one. Everything was in slooooooow motion. The neurological term for this is bradykinesia, meaning slow movement. I was stiff like the Tin Man without oil, robotic-like, slurring my words, with slow thinking. I shuffled with dystonic, muscle-cramped toes.
Tom and I were lost in the electrical jargon when Dr. Wiener and Cindy bantered around terms like amplitude, rate and pulse width. If only I was an electrical engineer, my eyes would light up with understanding. Nearly twenty changes of the settings during this programming session resulted in–thankfully not simultaneously–a right arm flying like a bird, limping on my leg foot like I had a hitch in my giddy-up, very slurred speech, my left hand being unable to open and close at all much less like in the chicken dance, no arm swing in one arm, a little dystonia here and a lot of dyskinesia there, curled toes and looking like I is trying to hold myself together as though I was afraid of soaring off the chair.
This programming session was just too weird for words. It was a shame that Tom witnessed and I experienced this grueling session. When it was over, Dr. Wiener changed the settings back to where they were when I arrived. I heard her stinging words: “I just needed to find out that there was nothing more that I could do for you with the programming adjustments.”
When leaving, Cindy hugged me good-bye. It was as though she was saying good-bye forever, that I was a hopeless case. Wait a minute, I wanted to say, but didn’t. Weren’t there 12,964 combinations of programming? We only tried 20 variations today, leaving 12,944 to try later.
I wanted so desperately to be the DBS Poster Child but failed. I couldn't get with the program.