“It Won’t Kill You”
The physician assistant studied my walk. My right arm swing was out of sync with my left. Right was lower.
“It appears to be Parkinson’s,” she said, almost cheerfully. “The good news is it’s treatable. And it won’t kill you. Something else will.
“The bad news is Parkinson’s is progressive and incurable.”
I heard those carefully chosen words on an early spring day in 2014. The exact date I don’t remember.
Not remembering diagnosis day is quite unusual among Parkies. For most it’s a red-letter day, the day their life changed forever.
I was more relieved than shocked at the news. Finally, I had an answer for the bedeviling symptoms that had been mounting since 2006: depression, extreme fatigue, leathery fingers, violent nightmares acted out at my wife’s expense.
In one vivid dream, I was a soldier in World War I. Germans were attacking my position. I hurled myself down an embankment, arms flailing. One arm, in real time, struck my wife.
At other times dreams threw me out of bed, knocking over and breaking the bedside table and lamp and cutting my forehead on the table edge. (The cut was quite close to my eye, and blood still stains the carpet.)
Tell your internist about the dreams and their increasing frequency, my wife Struby said. “I am worried.”
Just old man stuff, I thought to myself. No way to stop them. Waste of time to bother a busy doctor with that.
Had I messaged my internist, Elizabeth Warner, about the dreams, the PD diagnosis could have come months earlier and treatment started sooner. (The action-filled dreams, REM Sleep Disorder, are a hallmark of PD.)
In retrospect, I saw that some physical deterioration I had experienced was due to Lewy Body damage, not normal aging.
I had difficulty throwing a baseball. I was progressively losing distance on the golf course.
A 240-yard drive in 2010 limped 180 yards in 2015. I hung up my golf shoes and clubs that year after playing passionately for 55 years. I could no longer swing a club and maintain balance. (I returned to the game in late 2017 after intense training and exercise restored much of my lost balance and equilibrium.)
There were behavioral changes. I had uncharacteristically withdrawn from faculty friends at USF in the months before diagnosis. Depression was squashing my normal exuberance.
My classroom energy was lower. I love coaching and teaching. But some days I shortened class to fit what energy I had.
Rewinding to the time before diagnosis, my internist and her colleagues continued to search for answers to my case.
Vitamin B-12 deficiency perhaps? Nope. Monthly B-12 injections didn’t do much.
The odd leathery feeling in my hands sent me to the neurologists, referred by the internists. B-12 deficiency can cause peripheral nerve damage. The peripheral test for damage was negative.
But the PA’s test of my balance, muscle tone and walk revealed the true malefactor. It was PD killing off dopamine-producing neurons in my brain.
Oddly enough, symptoms often don’t appear until 50% to 70% of the dopamine neurons are dead.
Yet the PA’s diagnosis was tentative. No blood or other routine test can identify PD beyond any doubt.
Proof of diagnosis is considered to be significant symptom improvement after adjusting to the drug carbidopa-levodopa (Sinemet). The drug is commonly called the “Gold Standard” for treating PD.
The PA sketched instructions on paper for phasing in the medication over a month. See the doctor in three months, she said, making the appointment.
That was it.
No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.
I was figuratively shown the door, alone in the parking lot with the malady that would shape the rest of my days. The parking lot was for a university medical center designated a National Center of Excellence for PD care.
Compared to most newly diagnosed Parkies, I was fortunate. I had medical training. I was a reporter trained to seek validated, reliable information. I had been an editor-in-chief of large newsrooms, accustomed to aggressively making and carrying out complicated plans.
What if I had none of those assets? I shudder at the thought.
No system of care exists if you have Parkinson’s, unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.