Directors Anna Moot-Levin and Laura Green follow the extraordinary stories of three people living with Parkinson’s, capturing their Herculean strength and power to adapt.
by Lianna Albrizio
See the NYC Premiere of feature documentary Matter of Mind: My Parkinson’s on February 24 @12:45 PM at LOOK Cinemas (657 West 57th Street) as part of New York City’s 12th Annual Winter Film Awards International Film Festival. Tickets now on sale!
Peter Dunlap-Shohl and his wife are sitting at a table inside their Washington home, piecing together a puzzle.
Facing each other, Peter breaks the silence by expressing his appreciation for her continued loyalty amidst his daily battle with Parkinson’s disease.
“I was afraid I wouldn’t be myself anymore,” he says.
“Well, you are, thank goodness,” says his wife.
Parkinson’s is an incurable neurological disorder that causes spasms and progressively affects speech, motor skills and mobility in the nearly one million people living with the disease in the US.
Laura Green and Anna Moot-Levin, co-directors of the award-winning documentary The Providers (2018), directed the film, Matter of Mind: My Parkinson’s as the second installment in a trilogy that began with My ALS and will conclude with My Alzheimer’s. The documentaries chronicle the daily lives of people with the diseases, their caregivers’ pivotal roles in their lives and their extraordinary and triumphant stories of bravery and resilience in their battles.
The Parkinson’s installment was a passion project of sorts for Moot-Levin, who bore in mind a family member who has been affected by the disease, which made making this film particularly meaningful for her.
“In the case of Peter, who lives in Alaska, he’s been living with the disease for over 20 years now. He has this longitudinal perspective that’s unique, and he’s written and published a graphic novel about this experience with Parkinson’s and gives a lot of insight into his experience,” said Moot-Levin.
While this so-called “magic curse that finds interesting ways of screwing you up” may dictate their moves, thoughts and speech, per Peter’s account, he – along with two other people who are subjects in the documentary weren’t going to let the disease rob them of their identity, which they define as their unique abilities and talents that make them who they are.
Peter is a political cartoonist who lives in Alaska before relocating to Washington State to see a neurologist more regularly.
For Peter, the thought of losing the one thing that defines him – his career – is akin to being “snuffed out while I was still alive.” Peter, like Juan Solano, a Puerto Rican native who moved to Brooklyn, NY as a child, have jobs that require the nimble use of their hands. Juan is an optician who faces potentially closing his business – a longtime staple in the Bedford–Stuyvesant section of the borough – if his disease gets progressively worse and renders him unable to work. Peter’s first brush with the disease was a tremor in his leg, something he described a harbinger of “danger on the horizon.”
Amid the peaks and valleys of San Francisco, CA, Veronica Garcia-Hayes lives with her daughter and husband where the family attempts to navigate a “semi-normal” life. The mother of one was 39 years old and four months pregnant with her now preteen daughter when she was diagnosed. Despite her disease, she is a life coach and certified boxing trainer who helps other people living with Parkinson’s strengthen gait, balance and memory. These qualifications comprise the job her daughter – who is every bit the quintessential eyeliner- and jewelry-wearing preteen who makes a presentation to her class educating them on the disease – calls a “professional badass.”
While the film is a documentary, raw emotions and moments that feel like a scripted reality show give it a feature film feel. Though working as a trainer and being strong for her child, there is only so much strength she can muster before letting vulnerability overtake her.
“Holding it together is more exhausting than the disease itself,” laments Garcia-Hayes, who calls out the nature of the disease as an unapologetic “shit show” that may rob patients of their ability to walk and cause bone-breaking falls as it progresses over a decade later. “I’m not as OK as people think.”
Indeed, the disease is a hindrance as the patients attempt to carry out simple tasks like writing or even managing smile.
“I don’t smile, I smirk now,” says Juan.
“I feel like I haven’t done anything wrong and I’m being punished,” says Peter of the experience.
Naturally, the physical disabilities carry myriad mental consequences and frustrations from depression to sexual dysfunction to olfactory hallucinations and suicidal thoughts. But as bad as their situations get, Peter, Juan and Veronica intend to be here for as long as this imperfect planet permits. In fact, their disease serves as the Herculean strength that pushes them to get through every day. That, and a little love from their family; various therapies from walking exercises to medications like Carbidopa-Levodopa, a nervous system agent that works by being converted to dopamine in the brain; to surgical intervention.
Matter of Mind: My Parkinson’s also takes viewers inside Mount Sinai Hospital in Manhattan where Juan receives a life-changing brain stimulation surgery that helped manage his tremors, unpredictable motor fluctuations and he reverse his walking ability. While only a fraction of Parkinson’s patients is brave enough to undergo the surgery, viewing the procedure as “mysterious and scary,” Juan was willing to do whatever it took to better the quality of his life by slowing the progression of the disease, even if that meant calculated risk-taking.
“There are many more people that could benefit from surgery that aren’t getting it,” said Moot-Levin, adding that deep brain stimulation was first established in the 1990s as a treatment for people with epilepsy and Parkinson’s, and has even been shown to be a beneficial intervention in people with treatment-resistant depression and Obsessive-Compulsive Disorder (OCD).
More than a deep dive into the symptoms of the disease and its prognosis, Moot-Levin says Matter of Mind serves to demonstrate the ripple effect that one’s diagnosis has, and the so-called village it takes to help people through it.
“I think it’s important for people to understand the complexity of the disease, but also the people who are caregivers and how it impacts the whole family and community,” said Moot-Levin.
While Peter said he fired up his devices in an endless Google search about the disease in search of hopeful stories around healing upon his initial diagnosis, Green and Moot-Levin’s Matter of Mind: My Parkinson’s serves as a scenic beacon of hope for those struggling with the disease while challenging the impatient, future-fearing patient to slow down and experience the good that can come from the present moment. And, of course, the doctors, loved ones and furry friends who help make life a bit easier and even miraculous.
“You never know what’s going to happen when you don’t give up,” said Juan. “You might live.”
Lianna Albrizio
Lianna Albrizio is a seasoned journalist and editor passionate about covering all facets of the arts from film to books, music and food. She loves interviewing people and spreading the word about their amazing work for all to enjoy.
About Winter Film Awards
New York City’s 12th Annual Winter Film Awards International Film Festival runs February 21-25 2024 in New York City and includes 82 outstanding films, a diverse mixture of animated films, documentaries, comedies, romances, dramas, horror films, music videos and web series of all lengths. Our five-day event is jam-packed with screenings and Q&A sessions at NYC’s LOOK Cinemas, six Education sessions/workshops and a variety of filmmaker networking events all coming to a glittering close on February 25 with our red-carpet gala Awards Ceremony.
Winter Film Awards is dedicated to showcasing the amazing diversity of voices in indie film and our 2024 lineup is 58% made by women and half by or about people of color. Filmmakers come from 23 countries and 41% of our films were made in the New York City area. 13 films were made by students and 26 are works from first-time filmmakers.
Winter Film Awards programs are supported, in part, by public funds from the New York City Department of Cultural Affairs in partnership with the City Council and are made possible by the New York State Council on the Arts with the support of the Office of the Governor and the New York State Legislature. Promotional support provided by the NYC Mayor’s Office of Media & Entertainment.
Visit https://winterfilmawards.com/wfa2024/ for more information.
