In 2000, I was diagnosed with Young Onset Parkinson’s Disease (YOPD). What brought all of this on was I was having trouble using my left hand to turn a ratchet or screwdriver during work. My hand would freeze up, I had to concentrate on making my hand do what is second nature or “automatic” for anyone else. After going through a couple of local neurologists that never experienced YOPD, I went to Chicago to see a Movement Disorder Specialist. They confirmed I had Young Onset Parkinson’s Disease and said I had a high probability of being in a wheelchair in the next ten years. I beat ten years and got to fifteen years, but I had significant dyskinesia from the amount of medication I was on to battle the disease.
At this point, I was looking into Deep Brain Stimulation (DBS). I had heard good and discouraging reports from people that had DBS. I wasn’t excited about having holes drilled into my skull and wires fed into my brain with a pacemaker-like device implanted into my body. It all seemed way too invasive.
I began researching alternatives to DBS/ I came across a revolutionary video from Israel where the doctors were performing the MRI/Focused Ultrasound (FUS) procedure. It was remarkable seeing the immediate results for the patient on the video. I searched on the internet to see if any places in North America were doing trial studies with FUS and discovered seven locations in North America, two in Canada and five in the USA. Two of the five were on the east coast and closest to me. The first was the University of Virginia. Unfortunately, it was already at maximum capacity for the study. The second was the University of Maryland which was in the very beginning of finding candidates for their trial study. I applied by sending in numerous videos of me on and off my medication. Within three weeks I was in the car heading to Maryland for a personal evaluation. After extensive testing to see if I was a qualified candidate, I was accepted in August of 2015 and scheduled for the procedure on November 15, 2015.
November 15, 2015, my life changed. I went in early that morning and had my head shaved and the “halo” put on to steady my head and to cool my head while I was being zapped. The treatment was intense at some points due to the heat generated from 1000+ ultrasonic waves beaming into my brain. After over a dozen “zaps” and 5 hours, the procedure was complete.
My wife, son, mother, and mother-in-law were all patiently waiting to see the outcome. I jumped up, quickly got out of my hospital gown, got dressed, and physically ran down the hallway. I even ran backward to see if I could do it. I ran into the waiting area, and I was greeted by my family. They were astonished by my behavior, and we cried for about ten minutes. My dyskinesia and tremors were virtually gone. What a life-changing moment that none of us will ever forget.
Fifteen years later, I am still doing well. I am not as good as I was on November 15, 2015, but I can say I’m much better than I was. FUS, as well as DBS, are NOT cures to Parkinson’s but can “roll back the clock”. There is a misconception that these are cures. This makes it easy to forget Parkinson’s is a progressive disease. Until a cure is discovered, FUS to me was an excellent option for a less invasive treatment for a person diagnosed with YOPD.