It was a humbling experience. This week I met with the deep brain stimulation (DBS) surgery specialist on two consecutive days for an evaluation of my DBS system that was installed nearly two years ago. I was convinced that DBS wasn't working properly as I often threatened to yank the electrodes and wires out of my head, pull the stimulator out of my chest and flush the whole damn system down the toilet.
My husband Tom and I arrived 45 minutes early for our first appointment with the DBS specialist, let's just call her Dr. OK for short, and checked in at the reception desk. While in the waiting room, Tom asked me, "What's that on your shirt?"when he noticed specks of white on my paisley blouse. It looked like white-out as I tried to scrape it off with my fingernail. I wondered how I possibly could have gotten drops of white-out on my blouse, and then realized that at home two hours earlier when completing the paperwork for the appointment, I used white-out to correct the date on the application. Since today's date was usually the first question of any mental status exam, I knew its importance. I must have leaned into the white-out and gotten it on my blouse when making the correction. I was grateful that Tom didn't bring up the white specks in front of Dr. OK.
When I was in the waiting room, the medical assistant called my name. She escorted me to the exam room and en route she wanted me to weigh on the scales. She still hadn'tidentified herself, when I sarcastically asked, "And you are?" as I forced her to introduce herself. I allowed her to take my weight as long as she didn't say it out loud as Tom was in earshot. When I realized that I had lost 5 pounds since my last medical appointment two months ago, I was delighted thinking it must have been all that yoga I had done in the intervening time.
When Dr. OK whirled by, she seemed surprised to see us in the exam room as she hadn't been informed of our arrival, and she assumed we stood her up. I am quietly thinking: we would never stand you up as we know how difficult it is to get a date with you.
Dr. OK presented herself as competent, compassionate with a subtle sense of humor. With her lovely Russian accent, olive skin and petite body, she could have been, and probably was, one of the beautiful people on the surgical team at Steven Gulie's DBS surgery.
On Tuesday, Dr. OK tested and videotaped me while on my usual medication with the neurostimulator remaining in the "on" mode. If I would have known how many close-ups she would be taking in videotaping my fingers and dystonic (muscle-cramped) toes, I would have gotten a manicure and pedicure before the exam.
Most of the neurological tests were familiar, such as doing the chicken dance with my hands and tapping with my heals. However, there were a couple of new tests such as raising and lowering my right arm as quickly as possible as she pulled on my left leg as hard as possible.
Dr. OK asked Tom to videotape me as she tried to push me over from behind, in front and on both sides. Dr. OK commented on my good postural stability, meanwhile I'm thinking that I'm no pushover.
Dr. OK really was the first doctor that took a good look at my thick, red, ugly keloid scar above the neurostimulator. She remarked that keloid scars often occur in African Americans as she noticed the pale white skin of an Irish American.
Day 1 of the neurological tests was on the verge of ending uneventfully. I asked Tom for my eye glasses, and he pulled them out of his shirt pocket. When I put them on, I couldn't see clearly out of the left lens. When I noticed there was a cough drop wrapper stuck to the lens, I quickly removed it. I was hoping Dr. OK hadn't noticed when she smiled and said, "Oh, I thought it was a new fashion trend."
Tomorrow's testing would be more difficult with no meds from 6 PM today until sometime tomorrow.
Day 2 was indeed more difficult. As the first set of tests was performed without meds and the neurostimulator turned "on" I was much slower in my responses. By the time I was administered the last set of tests, I had been without meds for 17 hours and the neurostimulator had been turned "off" for three hours. I was completely unable to function with no walking, no talking, a blank face and mouth open like a stroke patient, no movement of my arms and legs almost catatonic. I felt so pathetic as I grabbed a tissue being on the verge of tears. Dr. OK said "You should be happy. It shows that DBS is working." I did not feel happy, only devastated. In order to get me out of her office, it was necessary for Dr. OK to put my velcro-strapped shoes on my feet, and I reluctantly shuffled out the door.
The Next Day
Dr. OK had reduced one medication by 50%. I walked around most of the day, being undermedicated and feeling like a zombie. And I am on Dr. OK's three month waiting list to have the settings on my neurostimulator adjusted.
I have three options: contact Dr. OK, contact my regular neurologist, or use my own good judgment. I decided that I would do all three: contact both doctors tomorrow with non-emergency emails and in the meantime, use my good judgment and give my body the medication it desperately needs to cope with PD.