Some statements I will remember the rest of my life because they changed my life. Like the hospital call about my boyfriend—Mr. Kraft has taken a turn for the worse. Like my veterinarian’s call—You have a very sick kitty. Like my sister’s call about mother—She’s gone. Like my neurologist’s diagnosis—You have Parkinson’s.
My first neurology exam
I was ninety minutes into a neurology consultation. It started with an electroencephalography (EEG) to check my brain wave activity. I rested on a bed for an hour while a technician gelled my hair and attached electrodes all over my scalp and connected leads to her computer. The diagnostic test was simple and painless. I had a blanket to snuggle under, and I even got to close my eyes most of the time. I looked funny after the test because my hair was a gooey mess reminding me of too much Dippity Do. She mentioned the doctor always wondered what she’d create next. She gave me a comb to try to make it look better and assured me the gel would shampoo out. But I did not care. I wanted to see the doctor.
The Parkinson’s diagnosis
He watched me walk straight down a twenty-foot hallway, make a turn and walk back. Then we sat down in an exam room. He asked me many questions about my past health and family medical history. Did I have trouble sleeping or getting dressed? Had my handwriting gotten smaller? Had my sense of smell changed? Had I fallen in the past year? On and on! He typed on the computer keyboard as I talked. I drew a clock and placed hands and numbers around it. I performed some physical tests like standing up while he pulled me backward and forward by my shoulders. We played finger games as I responded to commands. I tapped my fingers together in a coordinated way as fast as I could. I moved my finger from the tip of my nose to the tip of his fingers. I gripped his hand.
Then the defining moment that came this time in a question—Has anyone in your family had Parkinson’s Disease? As I whispered, No, I felt like I had been punched in the solar plexus. The game changer question was suspended in the air for the last painless test. The electrodiagnostic test on my legs and ankles measured the electrical activity of muscles and nerves. When he completed it, all I remember are two words—Parkinson’s disease. He may have said, “You have the early symptoms of Parkinson’s disease.” Or “you have several symptoms of Parkinson’s disease.” Or simply, “You have Parkinson’s disease.”
How long can I live with Parkinson’s?
I was stunned speechless. I probably had a deer in the headlights dazed look! He explained that symptoms were different for each patient. I was glad he talked because I was incapable of putting two words together. Not everyone has tremors or shakes, I learned. I did not—at least not yet. He tried to reassure me that he had patients who had lived good quality lives for over two decades even though there is no cure for a Parkinson’s diagnosis. As the consultation ended, I managed to ask what references he recommended that would not scare me. He suggested that Parkinson’s for Dummies was light reading. I did not know if he was serious or not. He gave me three weeks of sample pills to take daily with instructions to schedule another appointment. I left the office on a glorious sun drenched South Florida day, Tuesday, May 13, 2014—my life going down an extraordinary path I would have never imagined.
Question: How did you find out your Parkinson’s diagnosis? I would love to hear from you.