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.