The Beginning

The Beginning

My wife tells me that ‘there are no such things as coincidences.’ I had always been skeptical of anything ‘spiritual’ or mystical.  As a faculty member and colleague of mine at the university once said, ‘wishing is witchcraft or, at least, it seems that way.’ But, strange coincidences or spiritual guidance has led me to believe that Nancy, my wife, partner, and caretaker, is ‘right on.’

In 1997, at age 56, I retired from university teaching with 30 years experience, a nice pension, and felt that life was going to be sweet.  Nancy began to notice a tremor in my left arm.  On our daily walk/run, she mentioned that I was not swinging my arms at all as I ran.  When my left hand froze using garden clippers, she made an appointment with a neurologist.

After 45 minutes, during which time the neurologist asked many questions and put me through several physical tests, he diagnosed Parkinson’s Disease.  Nancy didn’t tell me then, but several years after the diagnosis she remarked that she had to hold on to the chair in which she was sitting so she wouldn’t fall out.  The neurologist began to talk about what having Parkinson’s meant.  We were in shock.  He said that Parkinson’s Disease alone wouldn’t kill me, but related illnesses probably would.  I might end up in a wheelchair, unable to care for myself.  He offered several books to read.  I took a couple, then went off for an MRI to ensure I didn’t have a brain tumor.  I didn’t.

What is Parkinson’s Disease exactly?  As a lay person, I know that in a Parkinson’s brain, the cells that produce dopamine which enable us to perform all sorts of motor tasks, function every day, think rationally, are dying.  Those cell deaths result in all sorts of motor function problems-we have tremors; we are rigid; our ability to move, to speak, to write decreases; ’executive functioning’ abilities decrease; we are depressed.  In short, our lives change dramatically.  The speed at which the disease progresses in people is as varied as the number of people who suffer from it.  Parkinson’s Disease was first diagnosed by Dr. James Parkinson in 1817.  According to Dr. Parkinson, it was a disease of ‘tremors’ and ‘shaking.’  Causes appear to be heredity and/or environment.

There was no Parkinson’s in our family.  As a teenager one summer, I worked in a factory that manufactured clothes dryers.  As the parts of those dryers were painted on racks, the paint that accumulated on those racks had to be cleaned off every night.  We dipped the racks in vats of Benzine, now known as a toxic chemical.  I believe that Benzine exposure contributed to my Parkinson’s.


That day in 1997 began a new chapter in my life.  We first had to call our daughters, other family and friends and tell them the ‘awful truth’.  I can remember telling Nancy as we left the neurologist’s office that, at least I didn’t have cancer.  However, my true reaction to the diagnosis was denial.  I didn’t want to attend Parkinson’s support group meetings where I saw people asleep in wheelchairs, frozen while they tried to walk, and where canes and walkers were in abundance.  Michael J. Fox’s book, “Lucky Man”, had no appeal to me.

For six years I controlled my PD with Requip.  Then Sinemet was added.  For ten years, while I had little inconveniences like drooling, dystonia in my big toes, an addiction to gambling (which I attribute to requip and my ADHD personality), and a few hard falls, I did quite well, especially compared to those friends I met who were suffering PD symptoms, but had far worse diseases than Parkinson’s.



I had ‘inside’ help from our daughter, Laura Jane, who worked for the Parkinson’s Action Network as the Director of Outreach.  She always gave my excellent advice.  Laura Jane brought me ‘out of the shadows’ of almost denying my condition, not wanting to read or talk about it to becoming involved in conferences and meeting people with similar conditions.

 She took me to conferences where she was speaking, using my situation in her talks, charming people, using a lot of humor.  As my condition grew progressively worse, she talked to Nancy about DBS and how she felt I would be a perfect candidate for it.  At first I didn’t agree, but these two women really run my life very effectively.

We began to read about DBS, which by 2008, had been used to treat about 30,000 people.  In 2002, the FDA in the US approved the use of medical devices now known as Deep Brain Stimulation.