Dr. William C. Koller, MD PhD, the world-renowned neurologist specializing in Parkinson's disease, recently suffered a fatal heart attack at age 60 while in his home at Chapel Hill, North Carolina. It comes as a shock and great loss to the medical community. For the record, these are some of my favorite memories of Dr. Koller, who treated me for Parkinson's disease at the University of Kansas Medical Center from 1987-1999.
I was always amazed that he would remember little things about my last visit, such as who drove me to the clinic the time before and where was my husband? He hadn't seen him for a while. He asked me to sing something for him one visit. I was in the community musical then, Fiddler on the Roof. I sang my one-line solo, which was oddly dissonant taken out of context. But he remembered that I
sang! He had 1100 patients and could recall the small personal things about me that I had shared as we visited and I tapped my fingers for him. I found that feat of his quite remarkable.
Another time I recall was when I was working and my husband, Jay, was asking about combining my medications with alcohol. We sometimes had a glass of wine with dinner or a beer on Friday's pizza day. He wondered if it was safe? Dr. Koller very nicely said that he rather enjoyed coming home after a long day, lying on the couch, putting his feet up, and sipping a cold beer. He laughed and said
he was from Racine, Wisconsin, which is just north of Milwaukee. He saw nothing wrong with that and said not to change a thing, with a twinkle in his eye. I will remember his wry sense of humor.
The year before he left KUMC, he had a resident doctor, Dr. "W." They worked for months to regulate Tasmar with my Sinemet. I had blood drawn every two weeks, and sometimes my liver counts went whacko and I would get an urgent call to come back to the hospital to repeat the blood work. I finally had a brief period of success. I saw Dr. Koller in October and he declared that I looked the best he'd ever seen me. Three months later, I was in the exam room, but this time into med failure. I was having severe dyskinesia in the evenings and/or tremors like a jack hammer. Suddenly, after just three months, I was the worst he'd ever seen me.
I had been on Social Security Disability for 2 years and had just started Medicare in November. In January, Jay and I sat in the exam room, ready to ask about the experimental deep brain surgery,
DBS/STN, and how much would it cost, when Dr. Koller brought it up first! He said they'd just received a grant to do 15 or so of those surgeries. Unfortunately for me, I would have to be on
Medicare. I was only 46. "I'm ON Medicare, for two months now!!" I chimed in excitedly. Dr. Koller saw no reason to wait, because at my rate of decline, I'd be confined to a wheelchair soon
enough. I was eager to have holes drilled into my head. That surgery was supposed to happen! I don't believe in coincidence!
Dr. Koller left for his next job as Director of Research for NPF at the University of Miami the same week of my surgery. My new neurologist, Dr. Pahwa came in on Monday, took one look at me and at
the time, I wasn't displaying any symptoms. He asked, 'You're having bilateral STN surgery this Thursday? You don't LOOK that bad. After going over the test data I had just performed that
day, he agreed that yes, I qualified for the bilateral procedure. I was very good at hiding my symptoms.
During the surgery, they were listening to the misfiring in my brain. Placing the wires, Dr. Oberman said, "You're a lot worse than you look." Vindication! I knew it, but after years of hiding it, not giving into it, I knew how bad it really was. No one saw my worst times, except once when Jay found me hiding out? in front of our computer, all scrunched up like the Notre Dame Quasimodo, and tremoring like a jack hammer, hardly able to turn my head to look at him. Dr. Koller knew how bad I was. He had said to us, "Why wait? The meds have done as much good as they are going to do."
I am sure he was right. I was turned off on one side for two weeks last year awaiting a battery change. I felt as if I'd had a stroke. The disease has progressed but the DBS has kept
it under control.
I did happen to see Dr. Koller one more time when he came back to KUMC for a visit. It had been a month since my DBS back in 1999. I was at the hospital for a programming session. I proudly demonstrated my recently rediscovered 'finger taps.' He reacted as if to say, "Yes, I expected you would be that good!!" It was my last time to see him but I felt he was the one responsible for my getting my life was back. My head was a burr of quarter inch long hair but it sure beat sitting in my Quasimodo condition 6 months prior to that.
It has been more than 6 years since my surgery and I still shock people when I tell them I've had Parkinson's for 22 years. This has been a miracle surgery. I hope my next 5 years are as good as the
first five. I'm waiting/searching for stem cells. I want to dance at my next 25th anniversary, standing on my own two feet, moving gracefully -- cured!