CANISTEO — I’m learning the hard way about the progressive component of Parkinson’s disease.

Comes a time when the disease does more than flail your left hand and make your handwriting indecipherable.

Comes a time when you’ll fall on your face, break a finger and create pools of blood from your forehead, nose and chin. And, I discovered, lie immobile on the floor hoping your wife hears your grumble before you spread too much blood.

First, the grumble. My larynx has always been what The Spectator city editor, my boss Neal Simon, calls gravely. Parkinson’s robs volume so when I speak listeners obviously strain to understand what I’m talking about. And when flat on my face and pooling blood on the second floor and could use my wife’s help to stand, the hard work of the disease shows itself.

Fortunately a 200-pound man makes a loud thump when he falls, with or without Parkinson’s. My wife heard the noise and came running. Even with her help, she and I were able to pull me into a sitting position only after a few minutes of tugging.

But the good news about that effort was that, after I sat up, gravity helped stop the blood from rushing from my nose and various new openings on my forehead.

The broken left index finger was more stubborn and embarrassing. Orthopedic surgeon Dr. Marc O’Donnell showed me the x-ray where a piece of bone the size of a grain of rice had chipped away and upset the tendons that now keep me from making a rude gesture with my left index finger, if you catch my drift.

The University of Rochester orthopedic group made two splints that look funny and embarrassingly call attention to a wound that should heal within a few months, the U of R technical assured me. That’s good news but still a few months away.

Until then my touch typing, never more than a bumble of stabs at the keyboard, makes writing stories for my favorite newspaper a slow chore filled with non-stop corrections.

Yeah, I realize that stumbling face-first onto a wooden floor is better than what some Parkinson’s victims face.

There is good news, of course. Remember images of actor Michael J. Fox with his arms flailing and head shaking during U.S. Senate testimony about the ravages of the incurable disease?

My left hand, tapping foot plus occasional difficulties walking and falling are obviously less severe than what Fox has faced for decades.

Janet Reno, Bill Clinton’s attorney general, was shaking at age 57 while announcing she has the disease. The medico who diagnosed my Parkinson’s said he examines a patient every week with the diagnosis. More than one million Americans, many of whom are near my almost 79 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 forced daily calm is sometimes interrupted with fears of being wheeled around a nursing home as a terrified immobile old man with spastic arms, uncontrollable 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. Sometimes I obviously don’t think enough.

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.

I’m lucky: my diagnosis was at age 72 and the first debilitating tumble took six years.

“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 said “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 for more than 60 years, keeps me apprised 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.

I hope that one of Richard’s updates will announce a breakthrough that will mean an end to pushing against walls and door knobs and growling for help from my wife.

 

Editor’s note: Spectator education reporter Al Bruce occasionally describes the progress of his disease and hopes a miracle cure will be announced sooner than too late.