I‘m Scott Orr. I was diagnosed with Parkinson’s disease in 2004 when I was just 38 years old.
The first sign of trouble, as it is with most PD patients, was a twitch in my left pinky. I wrote it off as stress, since I was working in the high-stress TV news business.
But the tremors in that finger increased and soon, my hand was shaking, and my wife at the time noticed the changes as well. One day, as I read Michael J. Fox’s biography, “Lucky Man,” on an airline flight, she looked at me and said, “This could be Parkinson’s.”
I looked up from the book. “No, I’m reading about it right now, and there’s no similarity between that and what I’ve got going on.”
“Okay,” she said, and I went back to reading.
A year later, the “stress” was causing the tremors to become more severe, and I went to my doctor to deal with it. Maybe some kind of prescription would help. He took a look, and had me move my arm and hand in a few odd ways. He left the exam room, and when he came back, he hit me with it:
“I’m afraid you have Parkinson’s disease.”
No. Not that. I knew what it would mean, and that was not what I wanted him to say.
He gave me the name of a neurologist (and an apology for having to break the news to me) and I drove home in a fog. This would change everything.
Sometime later, I picked up my copy of “Lucky Man” again, and, of course, this time, I recognized myself on every page. I guess denial can be stronger than you’d think.
Parkinson’s is a nasty disease, one that has no cure. Although it’s been more commonly seen in older patients (about 1 in 100, over 70 years old), I am one of the much-smaller group with Young Onset Parkinson’s disease. Fox is probably the most-well known person with Young Onset PD, having been diagnosed with it when he was just 30.
PD destroys brain cells in the substantia nigra, which is where the chemical dopamine is produced. Dopamine can’t be replaced, although drugs can, in many patients, prompt the brain to make a little more of it.
On this podcast, I discuss what it all means to me, 15 years on, how I deal with it, and what I do to “Be of Good Cheer” as the Bible says.
Spoiler Alert: My faith is a major factor in my ability to cope with Parkinson’s.
I’ve had deep-brain stimulation years ago, and the hardware keeps my tremors (mostly) under control.
But, as those of us with this disease know, tremors are only the first, most obvious sign of Parkinson’s.
Once you lose enough dopamine, symptoms start to appear – a very specific kind of joint stiffness called ratcheting, trouble walking (gait irregularity), and the well-known tremors. As PD progresses, victims inevitably experience more insidious problems: inability to move well, with periodic episodes of freezing in place, instability as reflexes disappear, soft or indistinct speech, “masking” of the facial muscles (leading to a constant stone-faced expression), a decrease in cognitive ability, and even inability to swallow, which can cause death.
I experience several of these, and frustration is a daily experience as a result.
So come with me on this journey of emotional discovery, and together, maybe we can make some sense of it.