Doc, Friends, and the DBS Wonderboys

PACEMAKER FOR THE BRAIN: DOC, FRIENDS, AND THE DBS WONDER BOYS

"The single biggest reason people don't have surgery is fear". (James Gregory Bonen, Memorial Hermann Physicians Advance, a2)

Come along with a 67 year old who found his way through the maze and in the process found that as FDR once said, "the only thing we have to fear is fear itself". That's a slight exaggeration, but I honestly felt little or no fear during the process. But then again, I had my friends, family, and the wonder boys to carry me through. These neuro-geniuses were an outstanding team, and, from day one, I trusted them, their staff, and SHANDS Medical Center. By the way, the "Doc" in the title is me. Over 30 years ago, a friend gave me that nickname because of my Ph.D. I'm Doc to all my family, including my eight grandchildren.

I know that I was choosing "elective brain surgery" which, when you think about it, sounds pretty stupid. The "wonder boys", Drs. Michael Okun and Kelly Foote, gave me a look and decided to treat me with a different concoction of medication first. The medication helped some, but I ultimately chose surgery. Why? they initially asked. I answered, "mainly to save my wife from possible years of bed pans, wiping my butt, feeding me, etc." I'd seen her do this for three years for her mother, and, to a lesser extent, her dad. As a friend said one night as I stepped away from the card table, "Nancy, he's not going to get better, he'll only get worse." When I adequately communicated this to Dr. Okun, he was ready to "fast track" me for DBS. There was no hesitation on my part...it was fish or cut bait. And, so I decided to fish.

I'd like to share my story with you in hopes that it will help answer some questions for people who are curious about or considering DBS. I can only tell you about what it has done in my life to this point. It has been an amazing ride and I hope that in some way, my experience will help you.

I'VE GOT WHAT???

My wife tells me that "there are no such things as coincidences." I've always been skeptical of anything "spiritual" or mystical. As a faculty member and colleague of mine at the university once said, "wishing is witchcraft or, at least, it seems that way." But, strange coincidences or spiritual guidance has led me to believe that Nancy, my wife, partner, and for the last 5-10 years, my caretaker, may be "right on."

At age 57, I retired from university teaching with 30 years experience, a nice pension, and felt that life was going to be sweet. Nancy began to notice a tremor in my left arm. On our daily walk/run, she mentioned that I was not swinging my left arm at all. When my hand froze using garden clippers, she made an appointment with a neurologist.

After 45 minutes, during which the neurologist asked many questions and put me through several physical tests, he diagnosed Parkinson's Disease. My wife didn't tell me then, but several years after the diagnosis, she remarked that she had to hold on to the chair in which she was sitting so she wouldn't fall out. The neurologist began to talk about what having Parkinson's meant. We were in shock. He said that Parkinson's Disease alone wouldn't kill me, but related illnesses probably would. I might end up in a wheelchair, unable to care for myself. He offered several books to read. I took a couple, then went off for an MRI to check for a brain tumor. I didn't have one.

What is Parkinson's Disease exactly? As a lay person, I know that in a Parkinson's brain, the cells that produce dopamine which enable us to perform all sorts of motor tasks, function every day, think rationally, are dying. Those cell deaths result in all sorts of motor function problems-we have tremors; we are rigid; our ability to move, to speak, to write decreases; "executive functioning" abilities decrease; we are depressed. In short, our lives change dramatically. The speed at which the disease progresses in people is as varied as the number of people who suffer from it. Parkinson's Disease was first diagnosed by Dr. James Parkinson in 1817. According to Dr. Parkinson, it was a disease of "tremors" and "shaking." Causes appear to be heredity and/or environment.

There was no Parkinson's in our family. As a teenager one summer, I worked in a factory that manufactured clothes dryers. As the parts of those dryers were painted on racks, the paint that accumulated on those racks had to be cleaned off every night. We dipped the racks in vats of Benzine, now known as a toxic chemical. I believe that Benzine exposure contributed to my Parkinson's.

That day in 1997 began a new chapter in my life. We first had to call our daughters, other family and friends and tell them the "awful truth". As hard as that was, we also had to tell the girls that heredity could play a part in developing Parkinson's. I can remember telling Nancy as we left the neurologist's office that, at least I didn't have cancer. However, my true reaction to the diagnosis was denial. I didn't want to attend Parkinson's support group meetings where I saw people asleep in wheelchairs, frozen while they tried to walk, and where canes and walkers were in abundance. Michael J. Fox's book, "Lucky Man" had no appeal to me.

Our friends of 34 years, Hollis and Linda, were both shocked when we told them about the diagnosis. Hollis, however, had been noticing some changes in my health. He was concerned and has shared that my movements had become slow and unsteady. While he and Linda did not know much about Parkinson's initially, they educated themselves on the internet, reading books and magazines, and talking with us.

For six years I controlled my PD with requip, adding sinemet four years ago. For ten years, while I had little inconveniences like drooling, dystonia in my big toes, an addiction to gambling (which I attribute to requip and my ADHD personality), and a few hard falls, I did quite well, especially compared to those friends I met who were suffering PD symptoms, but had far worse diseases than Parkinson's.

I had "inside" help from our daughter, Laura Jane, who was hired by the Parkinson's Action Network as the Director of Outreach. She always gave me excellent advice. Laura Jane brought me "out of the shadows" of almost denying my condition, not wanting to read or talk about it to becoming involved in conferences and meeting people with similar conditions. She took me to conferences where she was speaking, using my situation in her talks, charming people, using a lot of humor. As my condition grew progressively worse, she talked to Nancy about DBS and how she felt I would be a perfect candidate for it. At first I didn't agree, but these two women really run my life very effectively.

DBS??

So we began to read about DBS, its failures and its successes. The following are significant facts about DBS surgery:
- First performed in Europe in 1990. Results will scare you-many deaths, etc. Remember, though, that these patients who went before us were generally in the worst shape, were at "death's door" in some institutions and were not randomly drawn from the Parkinson's population.
-Parkinson's Action Network estimates that $25 billion a year is lost to the economy when disabilities are factored into the annual cost of Parkinson's Disease. Patients spend $1000-$6000 a year on drugs to reduce the symptoms of PD, trying to feel better. While these drugs help with PD symptoms, they will not stop the progression of PD and they also have serious side effects.
-30,000 people have been treated with DBS since 1990. In 2002, the FDA in the U.S. approved the use of medical devices now known as Deep Brain Stimulation.
-Approximately 90% of all DBS candidates have received relief through the surgery. Medicare will pay most, if not all, of the cost of the surgery.

A CHANCE ENCOUNTER?

My wife is a doer-cleans house, hosts parties, plans trips abroad, etc. We've spent much time enjoying Italy, Germany, Scotland, England, Canada, and the island of St. Martin. Most times, things have gone relatively smoothly. At other times, I suffered through most of the travel. I just ran out of energy after 10 or so days, and it took me a week to recover after returning home. On a trip to England in June, 2007, we spent the first week with our best friends from New Hampshire and her English aunt and uncle. It turned out that the aunt's niece was celebrating her 50th birthday with a "summer ball" and we were invited. We were told that her husband had PD and was in such bad shape that he would probably not attend the party. When we arrived at the party, Tom stood out- very dapperly dressed in a white tuxedo, handsome, and appearing to be in good spirits. However, his PD overrode all his natural and moneyed appearance. We gravitated to each other and talked about solutions, including suicide. I had to be honest that I had considered it. Our conversation became even more depressing as we drank. It turns out that he was a candidate for DBS in England six or seven years ago. About the time of surgery, he was involved in a car accident which left him a less desirable DBS candidate. He had missed his window of opportunity. I spoke with his daughter and his wife with each conversation ending with a plea to get DBS surgery. His wife, Deidre, said if it was only 50% successful, she'd recommend the surgery.

We came home from that trip, determined to see if I was a candidate. When I told my neurologist, he was concerned. "You're not that bad...Why risk it all, even if the odds are in your favor?" He brought in the Department Chairman to talk to us. He readily agreed that only the patient can decide how he feels and when he's ready for another alternative. He suggested an appointment for an evaluation. Although we liked our neurologist very much, we were interested in the team at the University of Florida and requested that my medical records be sent there for evaluation and an appointment. One of Laura Jane's former colleagues had recommended Drs. Okun and Foote as being the ones she'd want to perform surgery on her Dad.

We requested an appointment with Dr. Michael Okun at the University of Florida in Gainesville. We visited with him and his staff in August, 2007. He wanted to adjust medication first before evaluating me for DBS in case the medication change might be significant. That day, we were shocked by the friendliness of everyone we met, the organization of the neurology department, the teamwork that makes it so effective, and the obvious competence of all of the staff. While we waited briefly for the appointment, we were surrounded by information about Parkinson's in general and DBS in particular.

THE SELECTION PROCESS

While the medication changes were helpful, they were not sufficient to improve my quality of life. After emailing back and forth, Dr. Okun agreed to evaluate me for DBS. We made the trip to Gainesville and began the process that could lead to surgery. One of the most interesting forms I filled out contained the question "What are your goals for the rest of your life?" My answers were:

To stay as self-sufficient as possible. I certainly do not want to be a burden to anyone, especially my wife. I had seen her take care of her elderly parents who died at our house after she had cared for them for 4 years.

I have three lovely daughters, ages 40, 38, and 32, and eight beautiful and talented grandchildren. At least, one, I'm predicting, will become a national sports figure, a great song writer, a major politician, and inventor, etc. I want to be around to cheer them on and tell the world "that's my grandchild."

I am from Wisconsin, and while the University of Wisconsin Badgers have been very good at major collegiate sports, i.e., football and basketball, I'd like to be around at least one more time when they win a national championship in either football or basketball. (It would be too much to hope for to win both in one season like the Florida Gators!)

When we finished the two day marathon evaluation in October, both Nancy and I felt my chances of being selected were excellent, but we were really anxious to find out the four member committee's decision. We called at precisely the time we were told, but learned that a decision would have to wait a week because of an emergency experienced by one of the committee members. In that phone call, we learned that 2-3DBS surgeries were done every Wednesday, but the timetable for those being selected for surgery would be February due to religious holidays, University of Florida breaks, etc. The "fast track" I had been placed on wasn't that fast. When we learned that I had been accepted and were given the date of the surgery, we were elated.

Getting Ready

Surgery more than four months away-what could I learn, experience, do that would divert me from worrying about it?


Step 1- I found myself on a search for God and the meaning of life. I talked with the Monsignor of the local Catholic Church (I was raised a Catholic and given the last sacraments of the Church when I was ill at age 8); I spent half an hour with Father Tom Reilly, Monsignor of St. Anne's Catholic Church in Roswell, GA. I told him I was ready to go if it was time. Father Tom said, "I think God has a larger plan for you-let's pray for that." Nancy and I spent a lot of time talking about God. She was working hard to get me spiritually ready for surgery.

Step 2- I talked with friends in their mid 80's who are strict Baptists. He left me to ponder three things he would take into surgery-faith, hope, and a positive attitude. Faith and hope were harder for me, but positive attitude-no problem!

Step 3- I read, watched, and listened to a collection of CD's, DVD's, and books that broadened my knowledge of Eastern meditation, thought, and religion. I began to meditate on a daily basis. I found much information that made me more at peace with myself and the world than I had ever been.

Step 4- I exercised as much as my back and limited energy would allow. I did gain 6 pounds, so I wasn't as successful as I had hoped. If you have back problems, you need a quality pillow. I found one at the Tempur-pedic store and take it everywhere with me. I even used it at the hospital.

Step 5- I was taking medication 7 times a day, at least 18 pills. Nancy bought 7 weekly pill containers and with a permanent marker, changed them to daily containers. I was also having trouble taking them at the correct times- 11PM, 5AM, 8AM, 11AM, 2PM, 5PM, 8PM. We found an e-pill timer on the internet and purchased it for $79.99 (www.epill.com). It beeped at the appropriate times, and voila, I was accurate and timely.

Step 6-I have the habit of wandering off frequently in stores, malls, and amusement parks. It all came to a head when we took our recently turned 5 year old grandson to Disneyworld. I misunderstood where we were to meet following the autograph seeking line for Lila and Stitch. I ended up in one part of the park and Nancy and Hayes were in another part of the park. I finally found someone who loaned me her cell phone to call Nancy. This was after 1 1/2 hours of being separated. Our grandson turned to Nancy during that time and said, "Nanny, of we had brought our walkie talkies, we could find Doc." Upon returning home, I got a cell phone, too. That saves Nancy untold frustration in malls and stores when I disappear.

I continued to grow. I was trying to leave no stone unturned. I remembered an audiotape of a speech by the late Leo Buscaglia in which he describes an old man with no teeth and dirty clothes sitting along the river in St. Louis. He was the kind of guy most people would pass by without noticing, but Leo, being Leo, was bored with speech after speech at the convention he was attending, so he sat down and engaged this man in conversation. Finally, Leo asked the man for the one important thing he'd learned in his life. The man said, "The secret to life is to keep your mind full and your bladder empty." Buscaglia said it was the best advice he had received during the entire conference because..."you see, most of us doing the exact opposite; we keep our bladders full and our minds empty." (Source unknown)

I continued to avoid most things which talked about the surgery itself. 

Most information available for reading was more concerned with the technology related to the surgery and did not focus on patient feelings and concerns. I stayed away from that.

I began to think about the support group I 

wanted in Gainesville during the surgery. At that point, I knew that my three daughters and wife would be with me. I needed some male presence and asked Nancy what she thought about it. She instantly agreed and we talked about who we wanted there. Our best friends of 34 years who live in New Hampshire, one of our sons-in-law who I knew would be the "lead dog" (he's a veterinarian) if something should go wrong, and my brother, Tom and his wife all made the list. Our surrogate daughter, Brenda, who lives in Orlando, took off work and also came to be with us. After all the invitees had agreed to come, I wrote a letter to each, explaining how much I treasured having them in my life.

The letter follows:

Dearest Friends,

I'm overwhelmed by each of you who've made tentative plans to be in Gainesville, Florida, for my DBS surgery in late February. Your emotional support of me makes me humble indeed. Please know that you have a special place in my heart, and, apparently, I must hold a similar place in yours. Please know that if things change and you have a conflict preventing you from physically being in Gainesville, your thoughts of me will be equally appreciated.

I'm afraid I'm not much when it comes to expressing my feelings on paper. I'm not deeply into any organized religion, but lean toward the spiritual principles that love is the core of life...as John Lennon sang "all we need is love." I believe that each of us should not depart this earth without fulfilling some purpose, or in the words of a fellow education, Louis Raths, "to make a differenced that you have lived at all." I do know that I have come to appreciate how a serious disease can change your perspective and how perceptive and sensitive you become when you encounter so many people in need of your helping hand and heart. In a recent movie, a young man who had lost his wife lamented to a friend, played by Morgan Freeman, that there was no God. Morgan Freeman said, "Oh, you're wrong, there is a God. He/she gives us brave hearts" to work our way through the pain and suffering that humans often have to endure.

How could anyone have a better care taker, lover, friend, and role model than I have in my wife, Nancy? Can you imagine how more humane the world would be if we could clone a few billion of her in all colors, shapes, races, and cultures? The world would certainly shift away from greed and intolerance and move toward "love yourself and your neighbor." Nancy believes, and I agree, with many of the principles in the Celestine Prophecy. One principle is that there are not accidental meetings when people enter our zone of consciousness. Both we and the persons we meet have messages for each other. On many occasions, we don't open ourself up to receive those messages, but when we do, growth occurs. The search for universal meaning and how that influences our behavior is a common interest. It's important that we listen to both the people who share our "universal" spiritual view of God as well as those who believe in more "religious" orthodoxies.

I also believe in the power of scientific knowledge gained through repeated trials and errors. I am appreciative to the 30,000 or so who have undergone the surgeries I'll have. Many early surgery patients served as "guinea pigs" and took many more risks than I will have to take.

The purpose of this letter is two-fold...to let you know some of my thinking and feelings as DBS surgery approaches, and to reiterate how pleased I am to have your support.

Daughters, you know, I hope, how much I love you and need your love. Laura Jane, you helped make the surgery possible because of your incredible knowledge of Parkinson's and your determination that I should have the opportunity to feel better. Jennifer and Allison, your commitment to my care and your love for me make your support so vital. But, always remember that your life problems and your families should be your highest priorities. Thanks, girls, for the wonderful progenies that you and your husbands created. Those eight grandchildren are truly the "light of our lives". Brenda, I'm delighted that you plan to be there. I'll always remember my first night with you at a Braves game. While Jen and Allie flitted around the stadium, you were full of questions about baseball and listened carefully to my answers. You are a beautiful, smart, caring woman not unlike your two stepsisters.

Tom and Sue, I know how involved and busy you are with your children, grandchildren, and your travels. You are such a special brother and friend-thanks for always being there for me.

Hollis and Linda, thank you for opening your hearts to me as I became the husband of your "sister". The countless times you've changed your life plans to include us as your "best friends" means more than I can truly say. Hollis, I feel you are my brother and are as close as any of my wonderful siblings.

With my "love army" in tow, I believe I'll be successful in the surgery and that more will be expected of me regarding reaching out to others. If something should happen, know that I have had a great life and that I expect each of you to love one another.

With many thanks,

Alan

To Whom It May Concern:

This is the second philosophy of life sort of paper I've written. The first was in 9th grade English. HA!!

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!

Battery Pack and more

STEP 2 SURGERY

Time passed quickly and the week of surgery approached. After going through a day of pre-op very similar to that which occurred during the first surgery, I prepared for the day. I would thankfully be put to sleep for the three incisions Dr. Foote would make. One is on the side of my head where the wires had been stored. One is behind my ear at the hairline, and one is on my chest where the battery and stimulator are implanted.

The surgery went like clockwork, and before I knew it, I was in the recovery room again. I experienced post operative pain, which is to be expected. I took pain medication and then experienced some reactions.

When the physician's assistant had the opportunity to leave emergency surgery and come to the recovery room to program the stimulator for the first time, I experienced a weird sensation. The fallout from the percoset made me believe that I was in a spastic optometrist's office with him flipping through the possible lens strengths at a frantic pace. Thankfully, Nancy was there to explain the pain medication reaction. As the medication wore off, Pam Martin was able to program the stimulator without problem.

We stayed in Gainesville for 6 more days for the first adjustment. I had some uncomfortable nights on the pillow with the two incisions on my head, especially the one at the hairline. I dutifully did the neck exercises prescribed to prevent stiffness and future immobility.

I was excited and also nervous as the first adjustment time approached. Wonder if it doesn't work? We arrived early to fill out several questionnaires that are to be used in the research. We were met by Dr. Irene Malaty and a visiting neurologist from Israel who was there to specifically observe the Okun-Foote process. He mentioned that he believed their process was superior to the practices in Tel Aviv where the patient is completely anesthetized, the entire process is completed at one time and the stimulator is not turned on for a month. My immediate thought was one of thankfulness for the Okun-Foote process.

THE FIRST ADJUSTMENT

Dr. Malaty began the tune up process and spent a large portion of two hours testing my rigidity to the different selected amps. She kept asking if I felt any pulling or tingling as the amps were increased. I did not! This seemed to be very good news for her and Dr. Okun, for as Michael said, "we have lots of room for adjustment." We also discussed a reduction in medication which will be gradual as the 5 projected adjustments are completed. At this point, sinemet has been reduced by 20% and requip by nearly 50%. The side effects-toe curling and tongue out of my mouth have decreased some, but, in other ways, my balance, gait, rigidity, and general feelings of good health have improved. My off-time is almost nonexistent. this is a great beginning!

THE SECOND ADJUSTMENT

My second adjustment occurred just a few weeks later, and again, the stimulator was adjusted upward. Pam Zeilman, the DBS adjustor guru, also talked to us about medication adjustment. She and Dr. Okun have talked to us about being scientists in determining the best combination of drugs to ensure that Alan can feel his best. After a little bit of adjustment to suggested medications, we resumed our lives, even taking a week-long trip to the Washington, DC area to visit with two of our daughters and their families.

SUCCESSIVE ADJUSTMENTS

Our third adjustment was last week. Again, the stimulator was adjusted upward. We're half way through the adjustments (once a month for the six months following surgery), and we're feeling that this is a good thing!

Why Have Elective Surgery?

Why consider a surgical procedure and why consider DBS? I am a living example that medication has its limits. The more medication you take as Parkinson's Disease progresses, the more side effects you experience. In my case, "the treatment is sometimes almost worse than the disease." I began to wonder how much more medication I'd have to take and how often. I read that many patients end up taking medication every hour or two. That sold me on the surgical alternative.

Only DBS surgery has resulted in a 92% reduction in tremor that persists past eight years. Recent studies with STN stimulation have resulted in an 80% reduction in the Unified Parkinson's Disease Rating Scale as well as a 65% reduction in Bradykenesia. Deep Brain Stimulation, when compared to other surgical procedures, has a much lower morbidity rate, estimated at 2%. I think that my Emory neurologist believed that he was giving me the best advice when he said that I was doing so well on medication and he couldn't understand why I would consider DBS at this point. I now believe that advice, well intentioned as it was, was wrong. Too many of us are putting off surgery and trying to control our disease with medication. Those patients taking levodopa drugs beyond the fifth year of diagnosis have an 80% chance of experiencing motor complications which include the medication wearing off prior to taking the next dose, dose failures, rapid changes in motor symptoms, so-called "on/off phenomena", land dyskenesias, involuntary chorea, and dystonia. Finally, deep brain stimulation surgery can be completely reversed when a solution is found for this crippling disease. So, this really was a no-brainer for me, no pun intended.

Again, the bottom line for me and for the thousands of others who would be excellent surgical candidates is the "quality of life" issue: surgery vs. an ever-increasing amount of medication with less effective results.

If you've stayed with me and read all of this, let me summarize briefly. Remember Buscaglia's description of the little old man whose worldly advice was to "keep your mind full and your bladder empty." Thank you, kind sir. You have given me a partial answer to my quest. I no longer fear for my future, whatever that may be.

Thank you, Michael and Kelly, and the medical staff at Shands. Special thanks to Laura Jane, Jennifer, and Allison for their special insights and their love. I hope they will be as blessed as I've been. My son-in-law, Seth, did a good job keeping my daughters in line in Gainesville. HA! I also knew that if something had gone wrong in surgery, he would take care of everything and everyone. Our best friends of 34 years, Linda and Hollis, offer us amazing love and care. You are always there for us and we are so thankful that you are in our lives. My siblings and their families offered me information and have encouraged me all the way. Our special friends- Anni, Oscar, Hinson and Evelyn, Bob and Cindy, Jim and Ann, Bruce and Julie, Carmen and Lori, Mark and Karen, Michael and Andrea, Bill and Pat have supported me since the beginning. I am ever so grateful. Elena, our massage therapist, Yoga instructor, and Eastern meditation expert has enriched our lives tremendously and has opened a new avenue for learning and understanding. Thank you. Our internist and his nurse have followed me from the beginning offering support, removing staples, cheering me on. Dr. Rodrigues and Dimple, you are great! Monta and Peggy Burt, owners and operators of the Laurel Oak Inn in Gainesville, have provided support beyond description. As I've said earlier in this narrative, they've become family in this process. Finally, my thanks to Nancy-no one could have been more supportive, caring, and, too often, forgiving.

For those of you who have followed this personal inquiry to the end, you know that my faith is still largly outside the institutional church (you probably won't see me in a synogogue or church on the Sabbath). I am more convinced than ever that Nancy is right. There is someone guiding my writing. I wish you success in your search for a better life.

Finally, I'm optimistic that a cure will come for Parkinson's Disease, but I will not pray for a cure for me. The God of the universe has been too good to me.

If any of you have DBS in the next months, somewhat as a result of reading this, I will feel that this has been successful. If one of my Parkinson's friends takes the plunge into the deep end of the pool, so to speak, I will be even more excited. Nothing to date, to my knowledge, has been so successful in improving Parkinson's conditions than DBS surgery.

So you can live in the present and fear the future or you can take the steps that may well improve your life. Timothy Leary is quoted as saying, "turn on, tune in, and drop out." My advice would be to turn on and tune in.

Final Thoughts and Advice

My final adjustment of the six is next week. Things are going well for me. I do want to share some final thoughts with you.

Be prepared for each adjustment. Research shows that six adjustments are better than five;make the journey and be adjusted until you believe that your brain is "humming" beautifully. (By the way, I like Simon and Garfunkel).

Know as much as you can about issues related to DBS surgery. Attempt to obtain the "hard" professional research reviews usually written for your neurosurgeon and neurologist. Ask your doctor what he knows about emerging drugs and bilateral surgery (two sides). For example, I found in the most recent and comprehensive review of DBS surgeries, that 83.7% had DBS surgery on only one side. Perhaps, some of these patients had read the literature and had decided, like me, not to risk the side effects now associated with bilateral DBS. My neurologist summarized the possible side effects as problems with walking, talking, and thinking. My wife concluded that these were very important functions. For now, she'd take her husband the way he is.

Learn as much about your doctor as you can. If your doctors are "rising stars", as mine are, you need to understand that they are expected to perform high level research and get it published, teach, give speeches, and do fundraising (especially if they are at a teaching and research hospital). They also have families and a private life. Be respectful of their time, but be insistent about your needs and priorities. Be organized for your appointments with specific information about your progress or lack of. List your current medications with dosages so that your doctor can know where to begin with medication adjustments.

In short, be your best representative of yourself. God bless you and yours. d