Michelle Barnette

Where to begin? There is no beginning or end to this story. I remember a former life working as a journalist in Coffeyville, Kansas. My typing speed plummeted - my fingers were slow. Then I lost the natural arm swing in my right arm, and it curled rigid and stiff against my body. I remember that if I could just make it to Labor day, I'd have a week-long vacation - plenty of time to de-stress and come back calm and clear. I didn't make it until Labor day.

At age 25, I cried in the neurologist's office after knowing the probable truth - Parkinson's disease. By this time, it was hard for me to type or do anything - I quit my job on a Friday morning figuring that if I couldn't do the buttons on my shirt, I wouldn't be able to do my job. I had a chronic tremor that was difficult not to face. I taught my now ex-husband the art of denial - I taught him too well.

Today, I'm 34, divorced three years, and I've been on bilateral DBS therapy since July. I've been on the surgical table four times now - 2 six-hour sessions when I was awake - 2 sessions under anesthesia. Going to sleep was actually the more difficult to recover from. I woke up heady and dizzy and weak and would take three or four days to feel like my normal self. In the head cage, at least I could communicate and "experience" the surgery. It's really quite an interesting procedure. At one point I yelled, "I need a Xanax," and everyone laughed. Another time I said, "It feels like a leaky faucet in my brain." Again, laughter. And I still laugh when I think of how he asked me if I was seeing double and I had a towel over my eyes and said, "Actually, I can't see anything." He lifted it up and I peeked through, and all was fine. Of course when my doctor was pulling on my cranium and it felt as if it was a mushroom top he was pulling from a stem, and he said, "Whatever happens, don't move," I didn't say a word.

My grandmother says that if my neurosurgeon told me he was going to separate my head from my body, I'd say, "How about Wednesday?" That's how much I trust him. I've had respect for and from my other doctors, but I don't think I could have made it through surgery without this one - Other doctors seemed more interested in what others had to say about my condition - Dr. Slavin (University of Illinois-Chicago) locked eyes with me from the start and let me tell my own story.

I've had just about everything PD delivers at some point, including sky high chorea, defined by Webster's as "a wild, frenetic dance." At a PD conference once, someone in the audience asked what dyskinesia was. I had to laugh because I was in such shape that I could hardly sit down in my chair. Once, my grandmother and I were walking along a trail and I bent down to tie my shoe - I landed a perfect back flip - she was amazed AND scared - I've also blackened my eyes with my knees and broke my nose and teeth after slamming my face into a counter - I spit my four front teeth like powder down the drain.

I can't tolerate Sinemit anymore and have been taking Requip for almost a year now. I'm taking fewer medications than before, but I can't seem to wean myself off Xanax - I've taken almost any type of anti-Parkinsonian drug there is — my former doctor didn't recommend the surgery, but was heavy into drug therapy. He tinkered with my titratration schedule and refine it while I spent 1 to 3 weeks in the hospital. I was on everything from Remeron to Depakote to Adavan and Artane to Tasmar to Zoloft. Since coming off so many drugs, I've learned that the days sure run long when you don't sleep through them.

My quality of life has increased by 300%… yes, I am glad I had this surgery—it hasn't been a miracle, but it is a blessing.