Gil Thelen has been an acclaimed journalist for more than half a century. He began his career in the Washington, D.C. bureau of The Associated Press, where he soon became an award-winning medical reporter.
From there he went on also make a name for himself as a writer at the Chicago Daily News and in managerial positions at newspapers in North and South Carolina prior to his arrival here as executive editor of The Tampa Tribune in 1998. Five years later, he was named the Tribune's president and publisher, a position he held until his retirement in 2006.
That same year, Thelen began serving as executive director of the Florida Society of News Editors, a position he held until 2018. And in 2007 he joined the University of South Florida faculty as a Clendinen Professor of Critical Writing in the School of Journalism and Mass Communications.
But in 2014, Thelen was diagnosed with Parkinson's disease, a disorder in which cells in the midbrain no longer produce dopamine, a vital neurotransmitter that sends messages to the body's muscles, allowing them to function in a coordinated fashion.
Parkinson's can also manifest itself in other ways, including nightmares, depression, and loss of dexterity and memory. Unfortunately, there is no cure.
But Thelen, who also soon learned there is little readily accessible and clearly written literature on the subject, has since made it his mission to learn as much as he can and to share those findings with fellow "Parkies" on his website.
In 2017 he founded and serves as president of the Me-Over-PD Foundation, in association with USF's Zimmerman School of Advertising and Mass Communications.
The nonprofit organization's purpose, currently being played out in a project that involves USF graduate students, community members with Parkinson's and their care partners — including Thelen and his wife Struby — to develop a curated and sharable database of local treatment and support assistance. In addition, it's one meant to help develop meaningful relationships among Parkinson patients that can be adapted to serve sufferers throughout the country.
What's more, Thelen, 80, with input from Struby, an award-winning journalist in her own right — authored Counterpunch: Duking It out with Parkinson's, a textbook of sorts that was published last September.
It aims to equip and empower persons with the disease along with their care partners with ways in which they can take effective action against their aggressive foe. Thelen's goal is to get the book into as many doctors' offices as possible and into the hands of patients who've recently been diagnosed with Parkinson's disease.
Times correspondent Joyce McKenzie recently connected with the former Tampa Palms resident who now lives in Macon, Ga. via email. The interview has been edited for length and clarity.
What were some of the first symptoms you experienced that led you to seek medical attention?
My presenting symptoms were fatigue, depression and a leathery feel in my hands. I took those to my trusted USF internist, Dr. Elizabeth Warner. I did not suspect Parkinson's at the time.
Warner and I worked on the theory I might have a (vitamin) B-12 deficiency, which can cause sensory deficits (a leathery feel is one of those) in arms and legs. Warner called in a USF neurology consult. The physician assistant quickly diagnosed my PD after noting my shuffling gait, reduced right arm swing while walking, plus finding muscle stiffness upon physical examination.
Describe some of the emotions that swirled through your head when you first learned you have Parkinson's.
First off, relief that we finally had a diagnosis for my symptoms. Second, anger that the USF neurological PA offered NO information on PD itself or my prognosis – other than the un-soothing words: "It won't kill you. Something else will." Fact is it can be fatal through falls and aspiration pneumonia.
I also said to myself, "Parkinson's picked wrong this time. I am medically trained, am a former medical writer, journalist, newspaper editor and college professor. I won't go unheard, or easily."
What steps have you taken in your effort to "battle the beast," a term you use in describing the condition?
Research the malady. Start a blog to share what I learn. Engage other Parkinson's people in working together on measures to tame the "beast." Find a physical therapist to work with me on PD-related mobility and balance/equilibrium challenges. Find the best and most effective exercise program. For me it is Rock Steady Boxing, which has programs throughout our region.
In your book, you describe how together you and your wife overcame stumbling blocks, which you contend could have adversely affected your longtime marriage. How did you work through them? I believed for a considerable time that Struby was in denial about my physical, mental and emotional changes caused by PD. She seeks the "why" about many things in her life. There were no "why" answers to many of PD's fluctuating and mystifying daily changes. PD wrests control of a patient's life, as well as sapping physical strength. It produces disorder. Struby hates disorder in any part of her life. I had become a mess-maker. A superb marriage counselor helped us turbocharge our daily communications. It's working.
There's also humor interspersed throughout the book. Why, in your view, is having a sense of humor so important?
My watchwords about PD are "Love, Laugh, Hope, Pray, Persevere." I try to live those every day. PD is an absurd disease, each case unique to the individual. If a person can't laugh at that reality, what can they ever laugh at?
You also stress that exercise is an important aspect of the fight against this disease. What kinds of exercises do you practice on a regular basis?
On average I work out five days a week, 60–80 minutes at a time. That's in addition to twice weekly, 90-minute Rock Steady Boxing sessions. My personal workouts include strength, balance/equilibrium and high velocity cardio training. I attribute my energy and involvement to that combination. I feel "lousy" if I'm off my exercise schedule.
You choose not to use the word "victim" when speaking about how you perceive yourself as a Parkinson's patient. Why is that?
I like the phrase "I have Parkinson's. Parkinson's doesn't have me. It will eventually get me. But I will go down swinging.
Lastly, in what way, if any, has Parkinson's made you a better person?
Parkinson's has helped me clear out junk in my mental attic. I live more openly and transparently. I am more "there" for people in my daily life. I am more God-and-Christ focused, trying to forgive and forget as much as possible. I am intently mission oriented, assisting Parkinson's People live well with their malady.
Gil Thelen can be reached at firstname.lastname@example.org. His website is www.shufflingeditor.com