I Have Parkinson’s… It Doesn’t Have Me
When I was 36 years old, after many tests done by a variety of doctors, I found out that the nebulous problems I’d experienced for the past three years really added up to one thing. My husband was with me at the time, our two young sons, ages 4 and 6, staying with dear friends while we drove into Center City Philadelphia to meet with a Movement Disorder Specialist. That afternoon I finally received a diagnosis – Young Onset Parkinson’s Disease (PD) – a progressive debilitating disease for which there still is no known cure more than 14 years later. At the time, neither of us knew enough about PD to be scared. I was just relieved to finally find out I wasn’t crazy – that the ever changing symptoms were not imagined.
In November 2010, I had what has been a miraculous brain surgery called “Deep Brain Stimulation” (DBS) to offset the symptoms of PD that, over time, had become non-responsive to increased levels of PD drugs. At the time of the surgery, I took 26 PD pills per day in six separate doses and they were unreliable. My quality of life had declined significantly.
My DBS surgery actually consisted of three separate surgeries, done a week apart from each other. The first surgery, which I was awake for, was a short procedure to put fiducials (screws!) into my head to hold in place a plate - a map of my brain basically - that would be used during Surgery #2, or as I call it, The Biggie.
In surgery #2 a week later, I had to be awake the entire time (7+ hours) in order to help my neurologist determine when the electrodes they were implanting in both sides of my brain were in the optimum positions. In surgery #3, the wire bundle from the implants was connected from behind my ear, down my neck and shoulder, and into a stimulator implanted near my left collar bone. I was glad to be asleep for this final one. When I awoke, I had a fully functional battery-operated brain. Almost all signs of PD are now gone! I now take 7 PD pills per day spread out over 3 doses and we’re still adjusting my meds downward!
See Donna Miller’s entire journey at www.dbsdonna.com.