MAHOPAC, N.Y. - “We started out as strangers, but ended up as friends,” said Karen Ganis, looking around the poolside table in her backyard at the group of people who’d gathered at her Mahopac home on Saturday afternoon.
It was a reunion of sorts for Ganis. In June, she had embarked on a trip to Italy where she hiked through rugged backcountry terrain for 120 miles over an eight-day period—from Palermo to Agricento.
Ganis’ grueling hike was inspired by her father, who died from Alzheimer’s disease 20 years ago.
The trip is regarded as a spiritual journey for many of those who make it. Ganis made her trek a “Longest Day” fundraiser to benefit the Alzheimer’s Association Hudson Valley Chapter.
The Longest Day, named in recognition of the long days spent by caregivers of people who have dementia, encourages people to do any activity they choose any time they choose to raise awareness and money to help end Alzheimer’s.
Those who had assembled at Ganis’ home were part of that group of hikers, each with their own story to tell. Also on hand were documentary filmmakers Vincent “Enzo” Simone (a Somers resident) and Luke Chadwick-Jones (from England), who were there every step of the way to chronicle the entire sojourn. The two were reuniting to complete the editing of the documentary, called “Pilgrimage to Enlightenment,” which is essentially a sequel to Enzo’s award-winning documentary, “10 Mountains, 10 Years.”
“Ultimately, the goal of the film is to have people see it and then go home and say, ‘If these people can do something for their cause, I can do something for something that means a lot to me,’” Enzo said of “Pilgrimage to Enlightenment.” “And that’s what our first film (‘10 Mountains, 10 Years’) did. When that film first came out, it sort of created a wake. It moved through the film festival circuit and the number of advocates in those areas expanded. I hope this film strikes the same type of lightning as that.”
Both Enzo’s mother and grandmother passed away from Alzheimer’s and his father-in-law has Parkinson’s disease.
“I wanted to create a project that shines a light on the need to cure both of those diseases,” he said.
Besides Enzo and Chadwick-Jones, the reunion included Eileen Bencivengo, from Hamilton, N.J.; Julie Fitzgerald from Austin, Texas; and Tiberio Roda, from Como, Italy. Bencivengo is a longtime advocate and caregiver who appeared in Enzo’s first film, while Fitzgerald and Roda both suffer from Parkinson’s.
“The caregivers, for me, are the unsung heroes who are on the frontline in the battle,” Enzo said. “They are the ones who don’t personally have [the disease] but deal with all the attributes that come with it and have to deal with it, while maintaining their sanity, go to work and take care of their kids. They juggle a lot.”
Fitzgerald, who has Parkinson’s, came from Texas to the East Coast not only for the reunion at Ganis’ home, but to attend the Parkinson’s Policy Forum in Washington, D.C. She was diagnosed with PD when she was 54 but had been living with the symptoms for nearly 10 years.
“It took them that long to figure out what it was,” she said. “When I first found out I had it, I was really depressed.”
But Fitzgerald found the best way to combat that depression was to keep moving forward, staying active and doing the things she loves, while raising awareness of the disease. That led her to events such as the Longest Day hike in Italy. She spoke of the challenges someone suffering from PD faced on the trek.
“The walk was very stressful,” she said. “I watched all the videos and read all the paperwork, but I didn’t compute it was going to be up and down and up and down and it was going to be 110 to 115 degrees. You couldn’t keep your water cold.
“The hardest part for me was losing my shoes and having to walk in a new pair of shoes that didn’t fit properly,” she continued. “But that is sort of how I approach Parkinson’s— I wasn’t going to let it beat me. I was going to finish the walk one way or another, even if I had to let someone drag me.”
Roda, who is 64 and suffers from Parkinson’s, astonished everyone on the hike.
“Tiberio wouldn’t be the quickest one to get to the finish line but he does not stop,” Enzo said. “Unless someone stops him, he’s going all the way and he’s going to be in a good mood. He’s a stud.”
Roda said his biggest challenge on the hike was keeping his balance, especially when the trail got rough, and communicating, which was made difficult because of the disease.
“He fell a lot, but he always got up,” Enzo said. “That’s his mentality, he never stays down.”
All the hikers said that when they crossed the finish line, emotions ran high. They all said the feeling is almost impossible to describe. There was a lot of crying.
“I felt energized and really high on the accomplishment,” Roda said. “When people see me and know I have Parkinson’s and just did this epic [hike], it gives a lot of people who have PD hope that they can do great things, too. For people with PD, the thing is to never just reach a goal and say, ‘OK, I’ve accomplished it, I’m done,’ The thing is to give yourself another goal and move toward it.”
Fitzgerald said finishing the hike was a catharsis of sorts for many of the hikers.
“There were a lot of tears; all of us were crying,” she said. “It wasn’t just a little tear here and there. It was like this hour-long sob.
“It was life-changing for me because it gave me a lot of confidence,” she added. “It passes on the message to a lot of other people who are in the same boat: There are still a lot of things you can do.”
Ganis said finishing the hike was challenging, but not as difficult for her as it was for those in the group who have Alzheimer’s or Parkinson’s.
“When I decided to do it, it wasn’t so much about the physical part of it. I’m pretty physically fit so I wasn’t worried about that,” she said. “I was really thinking about my dad and doing it in his memory and the family that I’ve lost. But mostly what I took away from this is this incredible team of people who come from all walks of life and have incredible stories to share. It was humbling to see. It was humbling to see Julie, who had no shoes. And Tiberio, who struggled, but had a smile on his face and a laugh. It was incredible. I very rarely cry, but it was very emotional.”
For film director Chadwick- Jones, carrying the roughly 45 pounds of equipment on the hike was the least of his challenges along the way.
“Any time I felt fatigued I just looked around [at the others on the hike] and that was like rocket fuel to the heart,” he said. “It was just extraordinary what everyone was doing there. I cherished every moment of the experience and all the difficulties. But I think one of the biggest challenges for me would be when something would be happening in front of the camera and I would want to jump in and help, but at the same time I have a responsibility to show people what these people are doing because these people deserve a platform for that [hike] to be showcased. That was my role in this.”
Enzo said that when he began the film project, he never envisioned the scope it would eventually become.
“I don’t think we realized how much would go into it, filming in four different countries and six different states,” he said. “It’s taken us here and there and everywhere and all out of our pocket to get it done so other advocates could see it and be inspired to join our cause to put an end to Alzheimer’s and Parkinson’s.”
There is still some more work to be done before “Pilgrimage to Enlightenment” is complete.
“We have the editing process to go through and a few scenes on memories of the past at the beginning of the film that will be filmed using actors,” Chadwick-Jones said. “We have a giant amount of footage we’ve been fishing through for the last few days and it’s been heartwarming watching it all again. We are filtering through it and hopefully, in 10 days’ time we will be in a more solid state and then I will be back again to continue the process.”
Enzo said that when the film is finally finished, he will take it on the film festival tour, but not just any festival. He wants to screen it where it will do the most good.
“What we want to do is go where the advocates want it to be,” he said. “We will find festivals in those areas and that’s where it will be screened. It would be crazy to take it to some obscure place that doesn’t have a base of people who won’t take anything away from it.
“It wasn’t a film just to be a film,” he added. “It was a film to inspire people to take on their own projects and fight for themselves. The cavalry is not coming. You have to be willing to fight to champion yourself.”
Ganis called the film a “tool” that will better help her to get people to understand the role that caregivers play.
“This film was important for me because it is the 20th anniversary of my dad’s death,” she said. “I’ve been singing the same song for 20 years and after a while, I have found that people stopped listening to my story. Now, this is a tool I can use where it’s no longer just Karen saying, ‘Look at it this.’ Now, it’s ‘Look at all these people who are affected.’ [When it comes to Alzheimer’s], it’s not just the forgetting. It’s not just the shaking. There are so many little stigmas that people don’t even realize. And even to this day, 20 years later, people will say, “Well, he just forgot.’ They have no idea. There are so many other pieces. But now I have this tool and it is no longer just Karen saying it. I don’t want my children to have to see what I had to see.”
Asked if she would do the hike again, Ganis said, “absolutely,” but not just for the sake of hiking.
“I wouldn’t do it just to do it,” she said. “I don’t know if I would be motivated enough to hike 120 miles in oppressive heat and all the bugs. But to do it again for this cause, absolutely.”