I was anxious when my husband, Tom dropped me off in the office of Kaiser Permanente Neuroscience clinic in Sacramento. It was a 90 plus degree day in April of 2004, hot even by Sacramento standards. The purpose of today's appointment was neuropsychological testing required for Deep Brain Stimulation (DBS) for Parkinson's disease (PD).
I met with a humorless neuropsychology intern. I attempted to get the intern to smile as she administered eight hours of tests. My attempts were in vain.
Surgery candidates for DBS were not allowed to be demented, disoriented, depressed or deficient. Apparently DBS can make any of these characteristics worse. I did my best not to exhibit any of these traits.
I was asked to count backwards by 7 starting from 100, and as quickly as possible: 100-93-86-79-72-65-58, etc. No problem, I thought. I can do this.
In order to test my attention and concentration, the examiner read a string of digits at a rate of one per second, and asked me to repeat it backwards. For example, if she said 8, 4, 2, 3, 9, 7, 5, 4, 1, 0, I must repeat it back as 0, 1, 4, 5, 7, 9, 3, 2, 4, 8. This was more difficult, and I wondered if it had anything to do with PD.
To determine my general intellectual functioning, I was asked the definition of certain words. This was an easy task for me, except for the word “amanuensis,” which meant one who copied manuscripts or took dictation, similar to a secretary. And I fixated on “amanuensis” and when asked about the names of the continents, I remembered all but one, and obsessed on that as well.
When I returned to Denver, the tests results arrived in the mail several weeks later. There was some mention of “mild cognitive impairment.” When I whined to my neurologist in Denver about this label, she tried to reassure me by saying, “They have to say this because in case there is a problem with surgery, they can say that you weren’t perfect before the surgery, and you’re not perfect now.” I wasn't reassured.
Exactly a year later in April of 2005, I returned to Sacramento this time for DBS. Tom and I sat in the same waiting room in Sacramento for the pre-op appointment with Dr. Wheelock, the neurologist on the surgical team. Patients smiled at us when reading our custom made T-shirts with pictures of the straw man from the Wizard of Oz with the caption, "Did the Wizard Ever Get Back To You About That Brain." We hoped to bring a little levity to the neurology waiting room.
After moving into the exam room and waiting for Dr. Wheelock to arrive, Tom and I spotted a plastic model of a brain with multiple parts and a tiny plastic replica of a Montreal Expos baseball helmet on top. Knowing that the Montreal Expos was a defunct team, our curiosity got the best of us. Tom took off the baseball helmet, and the plastic brain scattered all over the counter. Under the helmet was an advertisement for the “Whine and Dine Club” for PD patients. I preferred drinking wine to whining about PD. Tom tried to assemble the parts of the brain by stuffing the helmet on top, but was unsuccessful.
Dr. Wheelock whirled in. When she observed that indeed my PD symptoms had worsened, she breathed a sigh of relief knowing that I now qualified for surgery.
She scrutinized the neuropsychologist’s report from the previous year. She hesitated, trying to be diplomatic. “The report indicated that you were having trouble multitasking.” I was offended and demanded an example.
“Tom, can you help me with this?” she asked. Tom, eager to be helpful, offered an example when we flew to the Texas Accordion Convention last month, and I discovered while on the plane to Dallas that I left my PD meds in Denver
“YES, Dr. Wheelock excitedly exclaimed, “that is exactly what I’m talking about.”
I glared at Tom and silently fumed. Tattletale, I thought.
However, Tom didn’t inform Dr. Wheelock that I worked until 8 PM the previous evening, drove home and packed, organized my music and clothes for the concert, meticulously took my accordion apart and packaged it with bubble-wrap to protect it from damage while en route, stayed up until midnight, slept for three hours, caught the 4 AM shuttle to the airport, and most importantly, that this was the one and only time since my PD diagnosis nine years ago that I had ever forgotten my PD medication.
I've noticed slight cognitive impairment since the surgery. Sometimes, particularly when the meds aren’t effective, I experience slow thinking. I can’t get the right word out quickly enough or I forget the name of someone that I don’t know well.
Instead of writing down the items I need at the grocery store, I sometimes use a mnemonic for remembering several items. For example, “HOME” might be Monday’s cue and refer to Honey, Oranges, Milk, Eggs. Wednesday’s mnemonic might be “CAT” and might represent Cookies, Apples, Tea. The problem arises if I am the store on Wednesday, and can’t remember “CAT” but do remember “HOME.”
I was imperfect before surgery, and I’m imperfect now.