Steve Evans

It will be one year this June Since I had DBS surgery. My life prior to it was one of constant movement. I was either under medicated or over medicated most of the time. My dyskinesias were such that I knew it was just a matter of time before I would not want to be in public anymore as my face would grimace and contort when they got bad. My doctor referred to these as tardive dyskinesias. I sometimes would shake so bad that it looked like I was playing a make believe banjo and the effort to control these symptoms would be exhausting. Still, I considered myself lucky. I did not have balance problems. Speech was sometimes affected, but not much. I also did not have freezing difficulty like so many of my fellow Parkinsonians. None the less, my symptoms were becoming incapacitating and I knew in my heart that I would become house bound within a few years.

My experience with Parkinsons began when I was 32. My handwriting was getting smaller and there was a small tremor starting in my right hand. I was diagnosed at the age of 34, Nineteen years ago. I’m 53 now. The first few years I wouldn’t take medication. I was in denial and hoped that my body would somehow correct itself. I took up jogging and educated myself about the mind and disease and positive thinking. My symptoms kept progressing and reluctantly I began the drug journey that so many of us find ourselves taking. First symmetrel, then sinemet, then sinemet cr. Eldepryl, comtan and a few others I’ve forgotten. Some of us can take the journey and see only a few side effects. Most of us , however, eventually become trapped. The side effects become as bad as the disease. With the drugs we are writhing and animated, Without them we are frozen and immobile. As time passed I found my window for normal time was slowly closing. Eventually, I had no more normal time.

Throughout my journey I have remained fairly active. Skiiing in winter, both cross country and downhill, and golfing in the summer . I also raised two kids and managed to keep working until a few years ago. My jogging was the mainstay however. I always felt in some way it was my defense against the disease. I even harbored ideas of completeing a marathon, but these thoughts were only in recent years and by then the disease was too far along to seriously consider it. Still I managed to do the local Bloomsday run every year. This run is 7 and 1/2 miles

After consulting with my neurologist I decided to have surgery. I was the tenth person to have DBS surgery in spokane and the first to have both sides done at once. I attended the support group meetings where I could observe and ask questions, and I felt pretty confident. I was in good shape as I had just run Bloomsday on May 3. My surgery was scheduled for May 31. I felt like I had done what I could to insure a positive outcome and the rest was up to the surgeon.

They say that you are kept awake for the whole procedure but I remember very little of it. I remember being shook awake so that they could ask me questions about what I was feeling. I also remember hearing my “brain static” as they were nearing the area in which they implanted the electrodes. In all., the surgery lasted about 9 hours and I was in the recovery room for about another hour before I was wheeled out in the hall where my wife and family and friends were waiting for me. I was tired and happy.

It was a week later that I had the stimulators put in. This was the only painful part of the surgeryb ,but even then it was fine in a few days. Three weeks later I had my first adjustment. As I sat there in the chair I was apprehensive. They had told me There was a pinched wire on one side and they were unsure if it was going to work correctly, but she turned it on and as she adjusted the settings my tremor gradually went away. I had been living with it for over 20 years! I hugged my wife. I hugged my sister. I even hugged the nurse. The tremor eventually came back though, and We have found that when the tremor is completely gone then my speech and balance are affected. So we are still trying to find a happy medium. The dyskinesias are almost gone . Same with the fatigue that was my constant Companion for so many years. Rigidity, too, is gone.

This surgery has been nothing but miraculous for me. I feel My parkinsons clock has been set back 10 years. And By the way, I’m still jogging. As a matter of fact, on March 2nd, after 8 hours and 40 minutes, I completed the Los angeles Marathon

Sincerely,
Steve Evans.