• by Les Luchter , Staff Writer, April 10, 2024

Today, April 11, is World Parkinson’s Day.

My first experience with a Parkinson’s disease patient came in one of my first jobs after college. Toiling as a reporter at a trade newspaper called Photo Weekly, I couldn’t help but notice the often-shaky hands of our managing editor, Ira Seebacher.

Someone told me that Seebacher had the disease, but that wasn’t what I first noticed about him. I’d heard he was once a sportswriter. Thus, he got to vote in the annual Baseball Hall of Fame selections, which put me in awe of him.

Years later, thanks to the internet, I learned that Seebacher had spent 35 years as sports editor at The New York Morning Telegraph. 

I was reminded of Seebacher when I heard about Peter Dunlap-Shohl, who had spent 27 years as a political cartoonist at the Anchorage Daily News. Dunlap-Shohl  was one of three Parkinson’s patients followed in “Matter of Mind – My Parkinson’s,” a moving documentary that premiered this week on PBS’ “Independent Lens.”

Dunlap-Shohl’s story, along with those of a Brooklyn optician and a San Francisco mom who is a boxing trainer for Parkinson’s patients, informed me of the great strides that have been made in treating Parkinson’s -- including Deep Brain Simulation Surgery, which the film says could help 15% to 40% of Parkinson’s patients, but is only used by 1% to 3% of them.

“Matter of Mind – My Parkinson’s” also shows us the great work being done by neurosurgeons and others at such facilities as Mount Sinai in New York and Kaiser Permanente in San Francisco.

And let’s not forget such pharma companies as Abbott and Abbvie, both of whom have joined with the nonprofit PD Avengers for today’s commemoration of World Parkinson’s Day.

Or perhaps we should follow their lead and say “World Parkinson’s Night,” since the trio’s activities this year tend to have a distinctly nocturnal theme.

“Night hours, once a sanctuary for rest, become a battleground where the complexities of the condition surface with unique intensity,” PD Avengers explains. “From involuntary tremors in the quiet hours to stiffness hindering movement – even within the confines of a bed – the nocturnal landscape for those with Parkinson's disease is fraught with a myriad of symptoms.”

Aiming for 10 million lights in honor of the 10 million people living with Parkinson’s, PD Avengers, Abbott and Abbvie are sponsoring “Spark the Night,” in which 300 iconic buildings, bridges, towers, and landmarks worldwide will glow tonight in vibrant blue.

There’s also PD Avengers’ two-month-long online Sleep Survey, launched mid-March in conjunction with Abbvie, which “delves into the often-overlooked realities of how Parkinson’s disease profoundly impacts sleep and aims to shed light on the lesser-understood symptoms and challenges of the condition.”

And, running not just at night but the entirety of World Parkinson’s Day, is a 24-hour live stream titled “Parkinson’s Around the World.” PD Avengers promises “interviews with patients, care partners and experts, music from Grammy-award winning artists, and inspiring documentaries to banish stigma and raise awareness of the burden associated with Parkinson’s disease.”

I don’t know if “Matter of Mind – My Parkinsons” will be one of the featured docs, but it’s already increased my awareness of the disease, and even led to action.

I viewed the film during a late-March online screening conducted by the Teaneck International Film Festival (TIFF) and, at the suggestion of Karen Sacks, TIFFF’s communications & venue coordinator who moderated a post-screening discussion, signed up for the Michael J. Fox Foundation’s Parkinson’s Progressive Markers Initiative.

The massive global project, which aims to improve diagnosis and treatment, is looking for 500,000 participants, with or without Parkinson’s. I found the study easy to sign up for, and then needed to spend just 15 minutes or so answering a bunch of questions about my health – a process I’ll need to repeat every three months or so.

Thanks to the flm I’m also pondering the purchase of a graphic novel, “My Degeneration: A Journey Through Parkinson’s,” written and drawn by none other than the doc’s cartoonist subject, Peter Dunlap-Shohl.

“Independent Lens” just offered the book to five winners of a contest promoting the documentary. Consumers could enter by either watching the film on the PBS app, signing up for the series’ newsletter, visiting the series’ app, or otherwise contacting “Independent Lens.”

The series quotes Foreword Reviews, which cited “Matter of Mind – My Parkinsons” as providing “a powerful new purpose for comics-as an effective tool to educate doctors, patients, and others about both the clinical and the personal sides of living with a disease.”

“Matter of Mind – My Parkinson’s” is available for free streaming on the PBS app.