Seizing On Hope

by Sondra Hart Dickter
Special To The Jewish Week

I could say the diagnosis made me shake.

But I was already doing that. The neurologist said he had never seen a case like mine. This was several years before Michael J. Fox announced he had Parkinson’s disease. To the world, it was a disease for the elderly. I was 47.

“I can’t have this,” I told the doctor. But all the test results were there. Early onset Parkinson’s.
The first sign of trouble had come months before, early in the morning on the way to my job as a third grade teacher at PS 219 in East New York. My legs would stop moving in mid-stride. I told no one, not even my husband, praying it was temporary.

Then one day the owner of a laundromat near the bus stop asked my husband why I was struggling to walk. That was the end of my denial.

Within days I was undergoing PET scans and other imaging tests to study my brain.

My mother had died. I couldn’t tell my father, and my husband cried when he heard the diagnosis.

Because I loved teaching, I continued to work. I was given medication that would slow the effects, helping to compensate for my brain’s failing ability to produce the neurotransmitter dopamine.

But it became harder to conceal my condition. “You were walking just like a roach,” an insensitive colleague told me once when I was having difficulty. The principal insisted I submit to a medical examination by an official doctor. The union rep told me to refuse. It did not affect my teaching. One month I was even named “Top Teacher.”

Then came the day I was crossing a street and froze. A driver got out of his car and escorted me to the sidewalk. No more, insisted my husband, Larry, who had already retired.

Reluctantly, just short of 30 years of full-time service to the Board of Education, I submitted the papers for disability leave.

But the minute they produced a cure, I would be back on the job. I’m still waiting.

After leaving work the symptoms got worse and I required increasing doses of a variety of pills that alleviated my freezing but produced the opposite effect — involuntary jerky movements that made me look drunk. My life became a cycle of good hours and bad hours determined by the medication.

On a trip to Florida, I was allowed to board the airplane before others because I was seated in a wheelchair. In mid-flight, I revived enough to dance a little jig and overheard a passenger tell another: “See that lady over there? She pretended to be in a wheelchair to get on the plane earlier. ”

During another trip to Israel, Larry and I were enjoying a fish lunch in Netanya when I found I couldn’t move at all. We sat in the restaurant for four hours until some soldiers helped me into a cab.

About 10 years after my diagnosis I underwent a pallidotomy, in which part of the malfunctioning area of my brain was burned by a laser so that functions could be switched to other parts of the brain. After the operation I walked down the hall unassisted, even though I hadn’t taken medication.

A few days later I had a seizure and had to be taken to the hospital. While much of the shaky movements were still offset, I once again wasn’t able to move as easily without the medication. The procedure had been largely a false hope.

Over the next few years I would undergo many other experimental procedures and medicines in an attempt to slow the effects of Parkinson’s, including the implanting of electrodes in the brain and a battery pack in my chest to provide deep brain stimulation, a kind of pacemaker for the ganglia.

In addition to my husband, two sons and their families, the people of my shul, Adath Yeshurun of Flatbush, became a second family. They placed a special chair for me in shul and visited during my many hospital stays. A neighbor, Rebbetzin Sara Ritterman, never lets a Shabbat go by without a visit from herself and often her children, and often sends meals as well.

I will never give up hope for a cure. To borrow in part from the words of the poet Samuel Taylor Coleridge, in the “The Rime of the Ancient Mariner”:
He heareth best who tryeth best in
ways both big and small.
For to show improvement we must give
each way our all.
So all must listen and you cannot choose
but hear.
All of us wait together for a cure to appear.

Note: My mother wrote the outline for the above while she was still able to hold a pen. As her condition worsened, I typed it up for her and promised to one day help her embellish it so she could share her story with others. Last July, she suffered a stroke, and is no longer able to speak or write. I added some details from memory. She is now in a nursing home, battling pneumonia and struggling to live. The cure will likely not arrive in time.
Adam Dickter

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