DBS - 9 YEARS LATER
My PD symptoms first appeared as a writer’s cramp in the late 1980’s when I was 39. Eventually I started dragging my right foot and began losing facial expression. I was diagnosed in Feb of 1992, when my wife was pregnant with our fourth child. As a newly diagnosed patient who had never been on meds I was asked to join a study of a new MAO B inhibitor. I learned in Dec 1992 that I had been part of the placebo group. At the time I was beginning to have trouble buttoning my shirts, cutting food, walking and was developing some tremor on my right side.
It was after almost stabbing my young son with a diaper pin because of my tremor and learning that I had been in the placebo group that I decided to start medications: an MAO B inhibitor Selegilene and 2 control release 25/100 Sinemet twice per day. The drugs worked wonderfully for five years. I kept working in my role as a senior staff member of a large US not for profit where I traveled to Asia on average 4 times per year for up to three or four weeks. It was a high stress job supervising a large-scale refugee training program in multiple countries. I began a daily practice of Thai Chi to help with inner and outer balance.
Around 1998 I began needing more Sinemet. I changed jobs after 25 years to be the Director of an educational foundation/institute, which required less travel. Over the next few years I undertook several different approaches to improving my overall health. I did Biological Medicine treatments for detoxificaton which included removing all of my amalgam fillings, and acupuncture for general balancing of my system.
Early in 2002 I was experiencing the classic “on” “off” periods with bad side effects of dyskinesia. I was either frozen in my chair or lucky enough to have an hour or two of decent movement three or four times a day. I could only drive very short distances when I was positive the meds were working. I had rigidity, festination/shuffle, tremor in my right side (mostly the leg), had trouble getting in and out of bed, lifting the covers off myself, challenges holding my urine, cutting food, and speaking both with volume and articulation. I was beginning to feel anxiety as well around the challenge of getting through each day either frozen or with discomfort from dyskinesia. The meds were controlling my life instead of me. I was 53 with four children.
That’s when I began looking into DBS. It had just been approved in the US. Few centers had much experience with the procedure and it was done using different protocols. It seemed to me that there was not clarity around the use of both stimulation and medication in treating symptoms. I have a Swiss friend who was a practicing physician who told me about a Swiss medical team that focused on DBS stimulation alone prior to reintroducing medications. It made so much more sense to me to see what could be done from stimulation before considering medication again.
I had to convince the Swiss team that given my age and disease status that I did not want to continue trying different medications. I wanted to do DBS and try to be free of medications all together. They were the only team I could find who would turn on simulation immediately following surgery and not reintroduce medication unless stimulation could not control symptoms. The idea of putting a patient on medication while attempting to determine stimulation levels seemed to make it very difficult to know what was a result of medication and what the stimulation was accomplishing.
My DBS was done on 11 July 2002. From that day I went medicine free for over 9 years.
Convinced by my experience that the Swiss team’s approach had merit, upon my return to the US in 2002 I tried to recruit various neurosurgeons in the US to take up their protocol. Dr. Craig van Horne, now at the University of Kentucky was the only doctor who adapted his protocol to make stimulation the primary treatment. He has had good success.
Since my DBS I have lived life fairly normally, virtually all my symptoms were addressed. Since the DBS I ride bicycle year round at least 2000 miles per year on rides of 10-15 miles/day – this is good for my body and my mind. However, in the last several years I have had occasional trouble walking especially in crowded situations or uphill and my voice has become a problem. I also began drooling a bit. Most of the time I could walk normally with no trouble and then all of a sudden I would freeze up or start to shuffle uncontrollably forward. I fell once, but caught myself numerous times on various walls or pieces of furniture. There were times my voice was stronger than others, but rarely was I understood without having to repeat myself. At that time I also began to feel more anxiety for no obvious reason.
During my 9 plus years of being off medication I had very few minor adjustments to the stimulation settings. When Dr van Horne did adjustments it was to see if we could help with the voice or the walking. It helped the walking some but the voice issues persisted.
In October 2011 I had the opportunity to return to Switzerland and visit with the Swiss neurologist Dr Joseph Ghika who was on my surgery team. He had come to know Dr Pierre Pollak who had worked with Dr. Benabid on the original development of DBS in Grenoble, France in the early 1990’s. He managed to get me an appointment with Dr Pollak to see if he could help with my voice issue, which despite having done LSVT, continued to be a real problem. And it was getting worse.
Dr Pollak spent almost two hours with me analyzing my response to various settings. At the end of the session he explained that in their experience with some DBS patients who had had the surgery a number of years ago, they were finding that the stimulation made the voice problems worse over time. The length of time one had been on stimulation seemed to be a factor. He recommended a reduction in stimulation parameters and adding low doses of medication. He proceeded to turn my settings down and prescribed medication.
It has taken some trial and error to achieve the best balance of medications. Dr Pollak’s advice was to make sure the medications were at dosages that did not produce any side effects. After several weeks of experimentation, my voice is much improved – not perfect, and my walking is back to normal.
After 23 years of dealing with PD and its symptoms I am fortunate enough to be operating at 90- 100% of where I was prior to my diagnosis. I credit, much but not all, to the surgery now supplemented by medication. In addition to DBS the other steps I have taken which include Biological Medicine treatments, acupuncture, Tai Chi, meditation, and visits with Spiritual healers have all, in my view contributed greatly to my current condition.
If anyone would like to contact me with questions or comments regarding my journey thus far please email me at mfpepin@sover.net. I recognize that this current status may not last but for the moment, I am accepting it with great appreciation.
