Underrepresented stories

Optician Juan Solano (seen in his Brooklyn shop Solano Optical Boutique) shares his story (along with Veronica Garcia-Hayes and Peter Dunlap-Shohl) in Laura Green and Anna Moot-Levin’s intimate and informative Matter Of Mind: My Parkinson’s

April is Parkinson’s Awareness Month. At the 95th Academy Awards in 2023, Woody Harrelson presented Michael J Fox the Jean Hersholt Humanitarian Award Oscar for his career, and The Michael J Fox Foundation for Parkinson’s Research. The documentary on Fox’s life, Still: A Michael J Fox Movie, directed by Davis Guggenheim (Oscar winner for An Inconvenient Truth) was shortlisted for this year’s Oscar.

Anna Moot-Levin with Laura Green and Anne-Katrin Titze on Juan Solano: “Juan we connected with because we were very interested in following someone through the process of DBS [Deep Brain Stimulation] surgery"

Laura Green and Anna Moot-Levin’s intimate and informative Matter of Mind: My Parkinson’s, written by Jason Sussberg, shot by David Alvarado (additional cinematography by Vanessa Carr, Mario Furloni, Tijana Petrović, and Justin Lewis) with a score by William Ryan Fritch and animation by Ekin Akalin of Peter Dunlap-Shohl’s graphic novel My Degeneration: A Journey Through Parkinson’s, is the second documentary in their ITVS and PBS Independent Lens series coming after Matter Of Mind: ALS (2023) and before Matter Of Mind: Alzheimer’s (2025).

Matter Of Mind: My Parkinson’s, edited discerningly by Katherine Gorringe, starts out in the Bedford–Stuyvesant neighborhood of Brooklyn with Juan Solano, an optician, who owns his own business, Solano Optical Boutique. The documentary shows him and his wife Lily preparing for deep brain stimulation (DBS) surgery, during which electrodes are implanted in his brain to help in managing the symptoms of Parkinson’s Disease. We are informed that the procedure could help 15-40% of those afflicted, while a mere 1-3% receive the treatment.

In the Mission District of San Francisco we meet Veronica Garcia-Hayes, her husband Dylan and their preteen daughter Isa. Diagnosed with Parkinson’s while four months pregnant, Veronica is an advocate for physical exercise. She is a boxing coach for those with Parkinson’s and we see how she and her family, maneuver life with the ever progressing, incurable neurodegenerative disease that causes unintentional uncontrollable movement.

Political cartoonist Peter Dunlap-Shohl stems from Anchorage, Alaska and during the filming moves to Washington State to receive better treatment for the Parkinson’s he lived with for 17 years. He describes his experience of the disease, which develops when nerve cells in the brain stop making dopamine, as “a magic curse” and “like wearing a wetsuit.” We see him on the bike with his wife Pam and walking their dogs out in nature contemplating a new graphic novel.

The documentary ends with a forewarning that concerns everybody: “More than 6.5 million Americans are living with a neurodegenerative disease - without new treatment the number will double in the next 30 years.”

From Brooklyn Anna Moot-Levin and from San Fransisco Laura Green joined me on Zoom for an in-depth conversation on Matter Of Mind: My Parkinson’s.

Anne-Katrin Titze: Hello Laura, hello Anna, nice to meet you! Matter of Mind - was the title there already or did you come up with the title for the series? It’s very good.

Laura Green on witnessing Juan Solano’s DBS surgery: “It’s really a wild experience to be in the room when something so momentous is happening.”

Anna Moot-Levin: The title was not there from the beginning. For a while it was known as The Brain Trilogy. Because we knew it was going to be three films that all have to do with the brain. Early on when we were making the first film, Matter of Mind: My ALS, we went through a brain storming session, the two of us with our producers and we really liked the multiple meanings of Matter of Mind. I’m glad that you like the series title.

AKT: It is very fitting because it makes you think of the mind, everybody’s mind. It goes beyond neurodegenerative diseases and becomes even larger.

Laura Green: I think that the film touches on themes that certainly are specific to this illness but that very much are resonant in many of our lives, whether or not you are living with Parkinson’s. One of the key things that we come back to again and again is that all of these people who are in the film, when they encounter this illness they adapt and they also sort of persist. They keep pursuing their passions but they also accept that life will be different and they will change. I think that without in any way diminishing the specificity or the difficulty of the experience of Parkinson’s, that’s something that I hope everybody can relate to.

AKT: Your three protagonists are wonderful - I’m so happy to have met them through your film. How did you find Juan and Veronica and Peter?

AML: We spent about six months speaking with families all around the country and different types of communities who are living with Parkinson’s disease. We really wanted to tell the untold story of Parkinson’s disease and the underrepresented stories. Peter we found through his blog where he shares some of his political cartoons and work on Parkinson’s. We thought his longitudinal perspective of someone living with the illness for 20 years was really valuable. And the fact that he lives in this rural underserved community.

My Degeneration: A Journey Through Parkinson’s graphic novelist Peter Dunlap-Shohl walking his dog in Anchorage, Alaska

And then Juan we connected with because we were very interested in following someone through the process of DBS [Deep Brain Stimulation] surgery. He had a very clear goal and drive and passion of maintaining his small business, his glasses store and work as an optician. And then Veronica we connected with through support groups in the San Francisco Bay Area and we were really interested in what the experience is like for a mother with Parkinson’s who is grappling with the illness while also parenting.

AKT: In all three cases the spouses are very closely involved, as is in Veronica’s case her daughter Isa. You two also seem quite close to them. There is a private moment when Isa and her father [Dylan] are stretched out on the couch resting and Veronica is exercising on the carpet and you are there with the camera. Did you feel that closeness?

LG: Yeah, for us making documentaries feels really intimate. You’re in people’s lives. You know, there’s mornings where we arrived at their house before they were awake so we could get in and get the morning routine. I think that we were really incredibly lucky with each of these three people that they were kind of like, yeah, we’re up for it, come on in! I think that moment on the couch, I’m not sure but I think that that might have been during a break and we were like, oh it’s such a great tableau, so you grab that shot. But you do spend all day in people’s houses and their lives and you build a deep relationship with them.

AKT: And with Juan you were at the surgery?

AML: Yes! Once in a lifetime experience! It was incredible, what a privilege to be able to witness someone’s brain surgery. It was really mind-blowing, but even more amazing is really the impact that we’ve seen in his life since the surgery. His symptoms have really dramatically improved and it’s been amazing to see that improvement in his quality of life.

Isa with her mother Veronica Garcia-Hayes

LG: And it’s really a wild experience to be in the room when something so momentous is happening. Of course they, the surgeons, are all very used to it but for us it’s, oh my gosh, I’m seeing a human brain! It was overwhelming for me but also like amazing.

AKT: So you were both there?

LG: Yes, the two of us and the cinematographer [David Alvarado].

AKT: The first footage of Juan after the surgery is incredible, when we see the change on his face and he says something like “I’m even strutting!” It is such a remarkable moment because we in the audience realise how much we don’t know about the brain. It felt enormous and must have been even more so being there.

LG: Yes, we read about it, we know that it could happen but it was truly tremendous. Then there’s six or nine months of adjusting everything so it works all the time and matches the medication. It was like we had dreamed it would happen like that and then that happened.

AKT: With Peter’s cartoons, was it clear to you that his animation would be in the film?

AML: Yes, his book My Degeneration does such a beautiful job explaining what it’s like to have Parkinson’s. We knew from the beginning that we wanted to use some of his drawings from that book in the film to explain what Parkinson’s is, as well as to explain his personal subjective experience of the illness that’s so beautifully illustrated in the graphic novel. And we decided to add some animation to the existing drawings to bring them to life for the film medium.

AKT: It works very well and makes us wonder in the beginning if it could be his illustrations. What about the music, which is very low key?

My Degeneration: A Journey Through Parkinson’s by Peter Dunlap-Shohl

LG: We have an incredible composer, William Ryan Fritch who is local in our area and who composes a sort of mind-blowing number of documentaries and television series. Mind-blowing for me as a non-musician, I am always amazed that he has such an endless fount of creativity.

Our editor [Katherine Gorringe] also has an excellent musical sense. We knew we wanted something that added a little comedy, a little lightness, a little quirkiness, while also dealing with some of the heaviness and the sadness and the loss. In terms of the ideation, we thought that our composer did a tremendous job in terms of creating a cohesive soundtrack with all of those notes and ideas.

AKT: How did it all begin? How did you get to do this series together?

AML: This series was developed in partnership with ITVS really against the backdrop of the growing epidemic of neurodegenerative diseases in the United States. In the beginning we experimented with the idea of a few different formats and ultimately we decided that three one-hour films would allow us to go into each illness which is somewhat unique to itself deeply while also having some common themes throughout the whole series.

AKT: During your work on the Parkinson’s film, did you come across Dr. Andres Leschziner of UC San Diego, who is doing important Parkinson’s research? I recently found out [from Gabriele Rigó-Titze] that he is a member of my extended family. He and his wife, Dr. Samara Reck-Peterson, are also involved with The Michael J Fox Foundation for Parkinson’s Research.

LG: We have a partnership with the Parkinson’s Foundation. That’s the major foundation that we’re working with in terms of the impact and outreach right now.

AKT: I am curious about an update. How are your three subjects doing?

AML: Since we finished filming, Veronica did decide to pursue DBS treatment and it’s been tremendously successful for her and she’s had a real improvement in her symptoms and she has been able to continue her work as a boxing coach. And Peter has published a new graphic novel, called Nuking Alaska, which is about the atomic age in Alaska. Juan is still doing really well, I just saw him a few weeks ago at a screening here in New York.

Anna Moot-Levin on Veronica Garcia-Hayes: “Since we finished filming, Veronica did decide to pursue DBS treatment and it’s been tremendously successful …”

AKT: His shop still exists?

AML: Yes, the shop is still open and going strong.

LG: And Juan brought a couple of his employees to the screening in New York because they’re very close.

AKT: In the film it is really nice to see him in his Brooklyn neighborhood where everybody seems to care about him. Also in San Francisco, the boxing community. The film is actually very much about community, were you surprised about that aspect?

JG: When we were researching Veronica, we went into it knowing that she was incredibly active in the Parkinson’s community. One other thing we didn’t know before filming with her was that her daughter is a 5th generation San Franciscan, which is rare in this very transient city. I live in San Francisco. And in terms of New York, I think that we were really excited to film in that neighborhood.

Our producer and cinematographer [Alverado] actually lives very nearby and says he was very excited and passionate about filming a story in his neighborhood. Meeting the shopkeepers and his neighbors on the street, it was really fantastic to see that community.

AKT: Thank you so much! Stay in touch with the third film in the series!

AML: The film on Alzheimer’s will be broadcast next year in 2025.

AKT: Best of luck!

LG: Thank you so much, it was really great speaking with you.

Matter Of Mind: My Parkinson’s will debut as part of PBS’s Independent Lens series on Monday, April 8