THE WONDER BOYS

The wonder boys-where do I start? We have been overwhelmed by Dr. Okun's responses to emails. We've actually sent emails during the weekend, not expecting a response until Monday. In about 15 minutes, there's a response. How remarkable!!! He and Dr. Foote truly are at the forefront of knowledge about Parkinson's. They not only have the genius, but they also have the caring that makes them extremely special.

Michael S. Okun is Medical Director, National Parkinson Foundation Center of Excellence and Co-Director of the Movement Disorders Center at the University of Florida, McKnight Brain Institute, Departments of Neurology, Neurosurgery, Psychiatry, and History. Dr. Okun received his B.A. in History from the University of Florida, where he graduated with honors. Dr. Okun went on to complete an internship at the University of Florida and a residency in neurology. He then completed two fellowships at Emory University, one in movement disorders and a second in microelectrode recording and surgical treatments for movement disorders. he was recruited back to the University of Florida where he created the Movement Disorders Center. The Center, which he co-directs, has over 20 interdisciplinary researchers in all areas of Parkinson's Disease and movement disorders. The center is unique in that it provides interdisplinary care for patients, as well as important basic and translational research. Dr. Okun and his colleagues in the center have ongoing grants and research into deep brain stimulation and Parkinson's Disease. They are recognized experts in evaluating patients and implanting DBS devices. Dr. Okun is also active in patient, family, and support group education about DBS therapy. He is also author of a book of poetry about patients and disease, "Lessons from the Bedside."

Kelly D. Foote is a graduate of the University of Utah, where he completed a BS degree in Materials Engineering as well as his Doctorate of Medicine. The U School of Medicine honored him with the Florence M. Strong Award in recognition of his outstanding qualities as a physician dedicated to patients. He did his general surgery internship at the University of Florida, where he also completed his residency in Neurological Surgery, including one year of dedicated training in Stereotactic and Functional Neurosurgery under the mentorship of Dr. William Friedman.

In 2002, he completed additional specialized training in Movement Disorder, Neurosurgery, and Deep Brain Stimulation at the Universite Joseph Fourier in Grenoble, France and Emory University in Atlanta, two of the world's leading centers for such studies. Dr. Foote is Co-Director of the University Of Florida Movement Disorders Center and has strong clinical and research interests in the application of stimulation for Parkinson's Disease and other disorders, stereotactic and functional neurosurgery, radio surgery and brain tumors. His research investigating novel applications of deep brain stimulation is sponsored by the National Institutes of Health and his work in the fields of DBS and radio surgery has been extensively published.

STEP 1 SURGERY

Finally, the week of the surgery arrived. We drove to Gainesville on Monday, February 25, in order to do the pre-op appointments on Tuesday. Surgery for DBS, step 1, is always on Wednesday. I was calm and so was Nancy. I didn't know it, but Monday night, following late coffee, Nancy couldn't sleep and, for the first time, began to get really nervous. She chose not to share that with me until after the surgery was over.

The pre-op schedule allowed us to take everyone to dinner at our favorite Italian restaurant in Alachua. I referred to it as "my last supper". That term received a lot of negative responses.

In truth, I felt OK the night before surgery. I asked Nancy to toast our children and friends that evening, and they appeared to be very moved when she said that no one could have more emotional support than we had. The atmosphere at the restaurant was great and the food was sensational. A few family members reminded me that I could not have anything to eat or drink after midnight if I was the first surgical patient. That reminded Nancy to call Shands operating room scheduler to find out the time of arrival and surgery. I was going to be first. That night I did take an ativan for the first time in 5 months. Nancy and I skirted around the issues related to the surgical procedure and our youngest daughter, Laura Jane, spent some time talking to us that evening. Before Laura Jane kissed us goodnight, she shared a quote from "Steel Magnolias" where Julia Roberts who played the character, Shelby
(1989)says"...sure there may be risks involved, but that's true for anybody, but you get through it and life goes on...I'd rather have thirty minutes of wonderful than a lifetime of nothing special." I must have fallen asleep before midnight. I did note that Nancy clung to me all night which was fine with me!

D-Day arrived. We walked into Shands at 6:30 AM with our oldest daughter, Jennifer, the insomniac. We encouraged the others to stay at the inn and enjoy the gourmet breakfasts they provide. We knew this would be a long day.

We were very surprised as we were led back to the pre-op area to find Dr. Kelly Foote already on duty and preparing to put the ring around my head to keep my head still during surgery. He then showed me two needles, one a bit larger than the other, and asked which one he should use to deaden my head. He proceeded to inject the smaller needle into 5 places on my head following the attachment of the ring to my head. I was taken for a CT scan, and when I was brought back to pre-op, the parade of doctors began. All wished me well as they explained their role in the surgery. Some were there simply as back-up in case their services were necessary, i.e., anesthesiologists. There would be approximately 25 people in the operating room. I would be deeply involved during the time of surgery.

I kissed my wife and daughter, heard Nancy say to Kelly that she expected him to take very good care of me, and I was wheeled into the operating room.



Dr. Burdick would actually have the major responsibility to drill. However, Dr. Foote never left his side during the approximately 3 1/2 hour procedure. Things proceeded rather quickly. I asked Kelly Foote when Michael Okun would be there and he told me he'd be there soon. No surgery of this type would be performed without his leadership. A few minutes later, he arrived. After some repartee with his colleagues, he turned his attention to me. He said, "Hey, Alan, my wife just called and my six week old son just recognized himself in the mirror. Don't you think that's pretty early?" He was so excited about his son that I thought he might bolt from the room and go home to see him. No worry. He was there for the duration.

I expected to be in "twilight sleep" similar to what I experienced in a colonoscopy. Wrong!! I was fully conscious the entire time. That consciousness has provided stories that I will tell until my last breath!! Things didn't always proceed quite the way the experts anticipated. Kelly remarked that the simulation they had run on my surgery had been 100% successful. However, after Dr. Burdick drilled the initial hole, Kelly decided that it would be difficult to place all four leads appropriately, so a bit more drilling took place. I had to pee badly, yet found it difficult to urinate in front of this august group. Kelly was comforting. He said, "That's got to be the worst position in the world, Alan, to try to pee from." Finally, in exasperation, I said, "Can we use a catheter?" A nurse got up and brought one back in nanoseconds. As she inserted it, she mentioned that I must have had a prostate problem. It hurt like hell, but did the trick and surgery proceeded.

Finally, pictures were taken of my brain with Dr. Burdick calling out the numbers associated with different sections of my brain. Dr. Haq stood back and ruled on the accuracy of each call. This fellow pointed out that he felt the last 10-15 pictures were inaccurate due to a loose screw on the equipment. Someone shouted out,"Can we get a screw driver?" Okun said, "gentlemen and ladies, let's plan to stay here a while. We're not leaving to go anywhere until we get this right for Alan." I said, "what time is it, Michael?" He responded, "It's 10:40, Alan, we'll have you out by 11:30." A threaded screw finally fixed the problem. Images were retaken and projected on the screen. Everyone cheered. Then Dr. Okun said, "Let's not go anywhere, folks, we need to map this thing." Again, Dr. Okun was insistent that things be done to his high professional standards. Finally, I heard Kelly say, "let's close up. You did a great job, Alan."

Michael came by to let me know he'd spoken to my family twice. All of a sudden, as my head was being stapled, the entourage disappeared, and there were only three people in the room. Drs. Foote and Burdick were two of them.

Nancy and the family sat in the waiting room, anxious to hear the results.

Michael Okun first called on the phone and spoke to Nancy letting her know that Alan's brain "sang" just as they hoped it would, although the song being sung was by Simon and Garfunkel. She laughed. Michael said that they believed the step 2 surgery with hookup to the stimulator would be very successful. I had done great and would be in the recovery room fairly soon.

About 10 minutes later, as the family talked about the phone call, Dr. Okun appeared and talked to them about 15 minutes. He cautioned to watch for "goofiness" in me. My middle daughter, Allison, laughed and said, "How will we know?" Everyone chimed in, agreeing, and had a good laugh.

Because there were no available beds in the hospital, I spent several hours in the recovery room. Normally I would have spent about an hour and my family couldn't visit. However, because of my extended stay there, the family was allowed to parade in and out to be sure that I was fine.
I was finally moved to a room about 5:30. Nancy spent the night with me on an Aerobed provided by the owners of the inn. (The hospital had no available cots.) The next morning, two of the residents visited, the physician's assistant came to remove the drain from my head along with three or four staples, I showered, and prepared to be released. It was over! I had not only survived, I felt sure I was pretty much prevailing! (Nancy's frequent referrals to william Faulkner's writing).

We spent two additional days at the inn, and came home on Saturday, March l. By the way, the Laurel Oak Inn (http://www.laurealoakinn.com) is our home away from home. It's wonderful in every way, a lovely Victorian house with beautiful gardens, wonderful food, and the nicest owners anywhere. They have become members of our family.

Nancy emailed Drs. Okun and Foote on the following Monday to give them an update.

As I write this, I am three weeks from having my second operation. This time, I will be put to sleep by an anesthesiologist,the thin insulated wire that was stored on the side of my head in the last surgery will be passed under the skin of my head, neck, and shoulder to a neurostimulator that will be implanted near my collar bone. Once the system is in place, electric pulses are sent from the stimulator through the wire to the electrodes planted in my brain during step 1 surgery. The impulses interfere with the brain signals that cause symptoms of PD. The stimulator is turned on low after it's implanted. Six days later, it will be adjusted for the first time. I've found out that I won't be going through security devices at airports any more. I hope I don't set off some kind of disturbance at Target or Publix. HA!