A DBS Story
Diagnosed at 39
At thirty nine I was diagnosed as having young onset Parkinson's, a disease which had affected my maternal grandfather much later in life. What began as a slight twitch in my thumb quickly progressed to a tremor that severely affected the left side of my body. Within two years of my first visit I was prescribed Levodopa- considered “the gold standard’ of all PD meds. Levodopa is a powerful anecdote that; unfortunately over time, presents horrifying side effects called dyskinesia, or involuntary muscle movements. As with most meds, over time the benefits of Levodopa are reduced.
After closely monitoring a positive reaction that Levodopa was a benefit, my Neurologist; considered me a candidate for Deep Brain Stimulation (DBS). I underwent the eight hour surgery in July, 2008. For six of the eight hours I was awake and very much involved. I was speaking to the Surgeon nearly the entire time which helped ensure that he was making progress. An MRI of my brain was utilized to give my Neurosurgeon; the specific location of my subthalmic nucleus. Two nickel-sized holes were cut out of my skull and two probes were implanted. Essentially these probes powered by a small device; the size of a Tic-Tac box, implanted just under the skin on the right side of my chest eliminate the “static” caused by the lack of dopamine. I returned to work about four weeks after surgery.
I was provided a small remote which monitors the battery level of the stimulator. I may also self-adjust my stimulator with this device. My tremor has completely subsided. Other symptoms; bradykinesia and dystonia are minimized between the delicate balance of a “cocktail” of prescriptions and adjustments to my device by my Neurologist.
DBS is not a cure for PD, nor does it slow the progression of all symptoms. Depending on your particular settings, the battery life in the stimulator lasts between 3-5 years. It is changed in a fifteen minute outpatient procedure by a Neurological Surgeon. DBS has completely eliminated my tremor. My gait has improved as well. In a celebration of my independence and life my brother Joe and I recently went skydiving!
Being diagnosed with PD at such an early age made me realize how precious every moment is. I have become an active member of The Parkinson's Alliance and it has provided me an opportunity to be part of a cure. One hundred percent of my fundraising efforts go directly to research. Research is conducted through clinical trials. I filled out a simple online form found on Fox Trial Finder, where I told a little about myself, and trial teams share information about their needs. Using next-generation technology, this site compares the information and identifies potential matches. I am notified of new matches as new trials are added. Trial teams can access a growing list of individuals interested in participating in trials. The site also allows me and study personnel to exchange messages and learn more about each other and the potential match.
“I strongly encourage the newly diagnosed; of all ages, to avoid giving into the thought that this is an impenetrable disease that can’t be eradicated. I’m sure the same was thought about polio.”