Thelen: Parkinson’s Disease shakes an editor’s hand

Parkinson’s Disease is a mimic. It is also a snowflake; no two incidents being identical in symptoms.

Once ignited, Parkinson’s can take time (up to years) to reveal itself. Symptoms occur, apparently, after a majority of cells in a part of the midbrain stop doing their job. They no longer produce enough of a vital chemical transmitter, dopamine. Dopamine inside and outside the brain speeds messages between neurons, allowing coordinated function of the body’s muscles.

My Parkinson’s was diagnosed last year after months of frustrating false starts and medical dead ends.

Parkinson’s is a big deal: seven million to 10 million cases worldwide. Treatable, yes, but no cure yet and unclear cause or causes. (Possibly some combination of heredity and environmental factors, such as chemicals.) Onset is usually after age 50, but it can strike people many years younger, such as Michael J. Fox.

My story began with dreams, violent ones three years before definitive diagnosis. I would act out the dreams physically, whacking my bedmate and loving wife Struby, or throwing myself out of bed atop tables or onto the floor.

Struby said tell my doctor. I said no need and chalked it up to normal aging. (I am 76.) For many others, the first Parkinson’s sign is loss of smell. My sense of smell is fine to this day. The snowflake effect. Go figure.

Recent research has shown those action dreams (REM Sleep Behavior Disorder in medical terms) are often a telltale indication of early Parkinson’s damage. The normal disconnect between brain and muscles in sleep fails to happen in those cases. You join the dreams with action.

It was harder to ignore what came next: the tremor in my right hand. I blamed it on an inherited and harmless family trait called essential tremor. My internist bought my story. We were wrong together.

My capable doctors were puzzled and worried. What could explain my stiff fingers that could no longer button shirts? What about my depression, bouts of fatigue, stiff muscles, sleeplessness, deteriorating handwriting?

Could it be vitamin B12 deficiency? Nope. Tested for and rejected.

Early in 2014, Dr. Elizabeth Warner, my then internist, asked a neurologist colleague to examine and run tests on my stiff, leathery and insensitive fingers.

Pay dirt. The neurologist Dr. Lara Katzen and her physician assistant Terry McClain decided in less than an hour I probably had Parkinson’s. Why? They observed my shortened gait, foot dragging, reduced arm swing and subpar balance ability.

Case almost closed. Positive response to medication seals the deal. I did have a positive response to the dopamine-replacing drug Sinemet.

This month is Parkinson’s Disease Awareness Month. Hundreds of events will occur nationally to raise money to combat the disease and spread knowledge.

The Parkinson’s Disease Foundation wants to hear from Parkinson’s patients and their caregivers in April about what things they would like researchers to study. After reviewing the survey results, the foundation will fund scientists to study two community-chosen research questions. The first two studies chosen in 2013 were fatigue and gastrointestinal complications. For more information go to pdf.org/communitychoice.

Parkinson’s is commonly viewed as a neuromuscular and balance disorder. Overlooked are the frequent emotional and cognitive effects, such as depression, impaired decision-making and memory problems. Dementia can be an end stage, if not a common one. Other diseases often prove fatal first.

Parkinson’s has changed my life in significant ways, not all bad. The depression has been eliminated with medication. A good bit of my fatigue and muscle stiffness is lessened by drugs that replace the lost dopamine. My 90 minutes of exercise three to four days a week has increased my energy and made me consistently feel much better.

When asked, I estimate that I am functioning at 80 percent of where I was three years ago. One less than earth-shattering casualty has been my golf swing, made microscopically short by stiffness in my back and core muscles.

I continue to work part time and productively as executive director of the Florida Society of News Editors.

I recently completed the Parkinson’s Disease Foundation training to be an advocate for patients in Parkinson’s research, to recruit patients for clinical research trials and to educate our community about Parkinson’s. The program is called Parkinson’s Advocates in Research.

A significant barrier to Parkinson’s research is getting people with the disorder to participate in clinical trials of promising new medications. If you have Parkinson’s, consider signing up to be a research volunteer. I am participating in one trial now.

To connect with a Parkinson’s Advocate in Research such as myself, please call (212) 923-4700, email info@pdf.org or visit pdf.org/pair. Other research resources are the Fox Trial finder at foxtrialfinder.org and the National Institutes of Health at clinicaltrials.gov.

Parkinson’s has deepened my religious faith through prayer and small-group scriptural studies,God has led me to an outreach ministry connecting spiritual but churchless young persons with one another and with the faith community.

Parkinson’s is a treatable but not curable disorder at this point. Many people live long and productive lives with it. You may have Parkinson’s, but it need not define who you are unless you let it. I, like many others, aren’t giving in. We’re fighting back and supporting one another.

This story was originally published April 5, 2015 at 11:00 PM with the headline "Thelen: Parkinson’s Disease shakes an editor’s hand."