Back in the headlines after Alan Alda's diagnosis, Spectator's Al Bruce updates readers on his journey
CANISTEO — Unless you were vacationing on Mars in late July, you probably heard that Army surgeon Benjamin Franklin Pierce aka Hawk Eye has Parkinson’s.
Alan Alda, who portrayed the surgeon on M.A.S.H., told CBS July 31 his first symptom was a twitching left thumb, the universal indication of the incurable disease that targets people everywhere.
This writer learned about the Alda diagnosis from half a dozen emails about the 82-year-old actor. One note came from educator/journalist/gardener Madonna Figura Simon, wife of my boss, Spectator City Editor Neal Simon, who from time to time wants a report on how I’m dealing with the disease.
Simon’s news sense is spot on because Alda and Parkinson’s were mentioned in the three daily newspapers I read: the Washington Post, New York Times and Spectator considered the story newsworthy.
Alda took the mature adult approach that revealing his diagnosis might help others: When you are first diagnosed with Parkinson’s “to be immobilized by fear and think the worst thing has happened to you, it hasn't happened to you. You still have things you can do,” he said
The actor told CBS he’s been living with the disease for more than three years.
Parkinson’s is much more prevalent in this area than I thought when a physician agreed with my self-diagnosis: “yes, you have Parkinson’s” when I staggered across his exam room while holding my flailing left hand seven years ago. I reached for a table with my right hand to prevent a tumble.
He obviously saw the stumble and clumsy attempt to immobilize the waggling paw.
Immediate thoughts involved panic with images of actor Michael J. Fox, his arms flailing and head shaking during U.S. Senate testimony about the ravages of the incurable disease.
My first symptoms seemed less dramatic: trembling left hand and tapping foot plus occasional difficulties walking and the upsetting imbalance.
Janet Reno, Bill Clinton’s attorney general, was shaking at age 57 while announcing she has Parkinson’s disease. Reno‘s debilitation seemed especially personal because she was one class ahead of me at Cornell.
The medico said he examines a patient every week with the diagnosis. More than one million Americans, many of whom are near my 78 years, share the symptoms.
The average lifespan for patients diagnosed at more than 65 years is normal, the doctor said. The problem is the quality of that normal lifespan.
My dad lived to a vigorous 88 years. If genetics play a role in longevity, I could have at least a decade of lousy lifestyle.
My forced daily calm usually disappears at sunset. Visions of stricken celebrities replay on sleepless nights. I sometimes fear being wheeled around a nursing home as a terrified immobile old man with spastic arms, uncontrollably legs and a frozen face.
Parkinson‘s is an incurable progressive degenerative disease of the part of the brain that controls unconscious movement of arms and legs: I need to think about every step when walking across the most level floor.
Some patients also develop depression, suffer memory loss or have hallucinations.
Fox was diagnosed at age 30, I’m grateful my symptoms waited more than 40 years. As the actor told senators, anyone is susceptible to the debilitating disease: doctors, teachers, policemen, nurses, legislators, neighbors, parents plus this marginally-competent writer who can no longer work to provide for their families and live out their dreams.
“For many people with Parkinson’s, managing their disease is a full-time job, a constant balancing act: Too little medicine causes tremors and stiffness, too much produces uncontrollable movement and slurring, and far too often Parkinson’s patients wait and wait for their medicines to kick in,” as Fox admitted during a particularly grim part of his Senate testimony.
“The one million Americans living with Parkinson’s want to beat this disease,” Fox told senators. “So do the millions more who have family members suffering from Parkinson’s.”
So do I.
“New therapies have helped some people control symptoms, but in the end (Parkinson’s patients) all face the same reality: the medicine stops working,” Fox said.
Fox described what all Parkinson’s patients eventually go through: “Physical and mental exhaustion will become more and more of a factor, as will increased rigidity, tremors” and involuntary movements, such as tics or embarrassing jerky movements of the arms, legs, and face that cause witnesses to look away.
When she learned of the diagnosis, my wife responded with “I’m worried,” a simple explanation of my numb feelings.
I keep my left hand in my pants pocket and think carefully about each step over uneven sidewalks and grab door knobs to prevent falling when I arrive home in the dark after a meeting.
Fox founded a foundation to educate and help the Parkinson‘s Foundation search for a cure. Alda, Fox and I aren‘t alone. Scottish comedian Billy Connolly announced in 2014 that he had been diagnosed with Parkinson's disease and prostate cancer on the same day. Neil Diamond stopped touring because of challenges dealing with the condition. Peanuts’ creator Charles M. Schulz has the disease. So did Robin Williams and Muhammad Ali.
College classmate Richard — whom I have known since the fall of 1957 — updates me about research and hopeful discoveries. I’m on mailing lists that provide weekly information for Parkinson’s sufferers. News media are starting to follow Neal’s habit of publishing articles about the disease.
For those of us with Parkinson’s, our wait for clinical advances are frustrating. We take our 100 milligram tablets of Sinemet and hope others will look away without too much embarrassment when we drop notebooks and pens during boards of education meetings and during interviews with students, principals and superintendents.
But when we walk, every step is a struggle: we keep close to walls and furniture and doorknobs. When the inevitable stumble occurs, I grab nearby pieces of furniture and push against walls to stop falling.
Spectator education reporter and columnist Al Bruce from time-to-time describes the progress of his disease and hopes a miracle cure will be announced during his lifetime.