How To Advocate: Remembering My Friend Jerry Foley

By: Gina Lupino
Edited by: Benjamin Stecher

Yesterday Jerry Foley’s life was celebrated in New York City. His death was sudden and unexpected, the news came as a shock to my system. I googled his name and saw the first two hits were “Jerry Foley Dead” and “Jerry Foley was an American television director and producer”. Was… Dead…  I couldn’t believe what I was reading. I felt sick to my stomach. My throat tightened. My body froze, my torso and neck muscles clenched, I looked down and saw my whole body shaking like an earthquake.

I met Jerry in early 2021. He was looking to make a documentary about young onset Parkinson’s Disease (YOPD) and contacted Ben, who suggested Jerry speak with me. I was living in Vancouver, BC at the time and told Jerry that I was planning a road trip across the US that summer to visit my family and friends in New York state and invited him to join me. He wanted to tell a story about the experiences of a young person living with Parkinson’s disease. I wanted to spread awareness about the disease, share information, and change stereotypes. It was a no brainer for both of us. So, I squeezed my belongings into a storage unit, packed my dogs and essentials in my van, and set off for the rest of that summer.

Parkinson’s Disease is a progressive, degenerative neurological disorder that affects a person’s ability to control their muscles and movements. It comes with a long list of nasty non-motor symptoms. Live with it long enough and you start notice how it affects your brain chemistry and cognitive abilities too.

According to the Parkinson’s Foundation, more than 10 million people worldwide live with PD and an estimated 4% of people with PD are diagnosed before age 50, so approximately 400,000. I am one of these 400,000 people who was diagnosed before age 50. I have been living with YOPD since January 2014. Every single day for the past 10 years, it has taken its toll. An enormous amount of time, patience,  discipline, effort, and resources are spent trying to manage living with this disease. Exercise is still the only thing shown to slow disease progression. The treatment options available to us only manage symptoms of the disease. Each and every one of the medications prescribed has side effects, some tolerable, some terrible. I have lost count of the number of different medications I have tried over the years and have experienced many of their side effects such as loss of eyesight, compulsive and impulsive personality changes, a variety of OCDs, dyskinesia, nausea, vomiting, loss of speech, impaired balance, and memory loss.

Detoured: Life after YOPD 

Jerry and I wanted to invite people into my world and give them an unvarnished glimpse into what it is to live with YOPD – what I do daily, what I think about, my hopes and fears, and how I try to live a “normal” life with this chaotic internal monologue playing in the background. I felt grateful to Jerry for getting the opportunity to tell this story unfiltered, something very few people living with a degenerative brain disease get to do.

So, in the summer of 2021, I drove from Vancouver BC, down the west coast of the US, across the south to Florida, and then up the east coast until finally arriving in my hometown not far from New York City. Jerry and his film crew met up with me in several cities along the way. They filmed me working with my physical therapist and kickboxing coach. They filmed me hanging out with friends, family, my dogs, and interviewing other people living with Parkinson’s who were older and wiser than me.  They filmed me meeting with neurologists and my naturopath. They filmed me parasailing in San Diego with my friend Andrea, who joined me on the first leg of the road trip from Vancouver to San Diego. Jerry decided to give it a try. I screamed and white knuckled my way through the experience. Jerry just smiled and enjoyed the scenery. 

The year before, I had begun the lengthy assessment process to see if I was a candidate for deep brain stimulation (DBS) surgery. This is a procedure used to help manage a person’s Parkinson’s symptoms. Below is a video that Ben and I, along with a the team at Ohio State University’s medical program put together for their medical students on DBS.

By the summer of 2021, I had been deemed a good candidate for the surgery. I was young, healthy, and very responsive to the dopamine medication. The next step was to call the clinic and schedule the surgery, but I was procrastinating. Deep down I was not ready. The idea of brain surgery terrified me. It carried risks, one of which was my voice and speech becoming impaired. Ben had great results, but the Frankenstein meets Texas Chainsaw Massacre photos he sent me showing the holes in his skull, the exposed brain tissue, the staples in his head, and facial bruising were horrific and scared the crap out of me.

During the road trip, I asked doctors and patients whether I should do DBS. By the end of the trip, I called it off. I was not mentally or emotionally ready yet.

I arrived in my hometown in September 2021. In the following months Jerry and his team created a 1-hour film that told my story which you can view here. This is the director’s cut, not the version that was released. It is the full, colorful story that we wanted to tell about the experience of a young woman living with Parkinson’s Disease.

Unfortunately, some of our subject matter choices were met with resistance. We were asked to exclude footage of me parasailing. We were asked to exclude my comments about the serious, devastating, and harmful psychological side effects that I, and many other people, experienced while taking dopamine agonists to help manage symptoms. We were asked to exclude a conversation between me and another person living with Parkinson’s in which he expressed a negative opinion about DBS. We were asked to decrease the length of the film which resulted in further content exclusion, such as the footage of me working with my physical therapist, kickboxing instructor, and naturopathic doctor who specializes in Parkinson’s Disease.

Jerry and some members of the film crew who followed me for a summer, along with my two dogs, Zac and Cookie

Ultimately the film was edited and reduced to a shorter version, excluding subject matter that Jerry and I felt was critical to show the plight of a young person living with a degenerative neurological disease. Here is a link to the edited version. I am happy and proud of the project results. The film accomplished my objectives of spreading awareness, sharing information, and changing stereotypes. I found a great friend, teacher, mentor, and advocate in Jerry. I am grateful for the support from Mediflix and Supernus Pharmaceuticals. But the choices made to delete critical content left us with a simplified, candy-coated perspective and ignored much of the complexity we had set out to capture.

What ethical norms should documentary filmmakers follow? Do they owe any ethical or moral obligations to illustrate reality and if so, to what extent? And to what extent should the wishes of the people whose lives they use to tell a story be considered in the final editing process?

I eventually did go through with DBS surgery in March 2023. I had two procedures in a hospital only a few blocks from Jerry’s home in New York City. He met up with me and my family for dinner the night before my second surgery.

I had no idea that this white haired sixty something year old guy would become a dear friend, teacher, and advocate for me and others living with Parkinson’s disease over the next few years until his untimely death last week.

Jerry left a legacy. He was a respected and successful director and had 24 Emmy Award nominations for his work, a fact he had kept quiet. To me, he was just Jerry, a die-hard Yankees fan, proud father, adrenaline junkie, who skied, rode a motorcycle, and was passionate about telling stories through film. He was sarcastic and found humor in the dark, bitter, ugly truths of life. He found beauty in the grit and hope in the sadness. He loved what he did and cared deeply about his work and the people whose stories he sought to tell. He showed me myself through his lenses, helped me recognize my worth, encouraged me to stand up for what I felt was right, and vehemently reject what was wrong. He stood for truth and despised candy coating anything. He taught me how to value myself and others with Parkinsons. He taught me how to be an advocate.

I pray that all of us advocating for young people living with Parkinson’s will do so with the same passion, spirit, devotion, and candor as Jerry did. And for those of us young folks whose lives have been detoured by it, advocate for yourself and for others always, speak up, know your worth, and don’t ever underestimate your elders.

And so, with all that said, I am proud to present the full version of the story I made with my friend, Jerry, titled The P Factor.

*****

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