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ALS, Through the Eyes of a Filmmaker and Daughter

Shaw, Gina

doi: 10.1097/01.NT.0000449809.98134.e8
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A young filmmaker discusses her personal journey with amyotrophic lateral sclerosis — as a daughter dealing with her father's illness and as a filmmaker.

It's an image that lasts less than five seconds, but a powerful one: the camera focuses tightly on the hands of an older man, his sleeves rolled up, stirring a pot of soup. But instead of holding the ladle nimbly in one hand, he clutches the ladle tightly between both hands, his fingers curled stiff and useless against his palms.

“Merhaba,” a short film by Lauren Rachel Brady, a 2010 graduate of New York University's Tisch School of the Arts and a rising young filmmaker, is full of such poignant, pitch-perfect moments. Filmed in Istanbul with a cast that is the Turkish equivalent of the “A-list” actors who occupy the front row at the Academy Awards, it tells the story of a young surgeon living in the United States who returns to Istanbul to see her family and introduce them to her boyfriend — only to find that her father's amyotrophic lateral sclerosis (ALS) has progressed much further than she had been told.

(The father and daughter were played by a real-life father-daughter pair: the beloved Turkish actor Sönmez Atasoy, who passed away in December 2011, before the film's release, and his daughter Fadik Sevin Atasoy, also a celebrity in Turkey.)

Telling this story was deeply personal for Brady. As she was making the film, ALS was taking its insidious toll on her own father, Kevin Brady, MD, an ophthalmologist who had retired from private practice in 2007 after more than 20 years, when the disease made it impossible for him to continue performing surgery.

Like the father in the film, Kevin Brady tried at first to shield Lauren and her younger brother from the reality of his illness. His difficulty walking and foot drop, he told them, was likely due to a pinched nerve from sitting at a desk and performing surgery all day.

“But it kept getting worse,” she said. “When he had dropped me off for my first year at NYU in 2006, he had trouble getting around the city and had to walk slowly.”

In an essay that appeared in the New York Times in January, Brady describes the day a few months later when, having completed her first year of film school, she returned to Denver for the summer and accepted her father's invitation to watch him perform surgery.

It was the first time that she was seeing her father operate, and it would be his last operation. He fell while walking toward the hospital entrance. A few days later, Brady sat down with her father and told him of her concerns. “He said, ‘I need to tell you something.’” Calmly and concisely, he explained, “I have something called ALS.”

Coming from a family of “theater and music people — we're so not sports people,” she explained — Brady had only vaguely heard of Lou Gehrig. She spent the remainder of the summer learning about the disease and futilely arguing with fate, telling herself, “There has to be a way to cure this.”

When she returned to school in the fall, Brady found herself — like so many other adult children of parents with degenerative diseases — torn in two, working very hard on her studies but feeling guilty about being far away as her father declined.

That, along with a growing passion for the Turkish culture that was part of her heritage on her father's side, formed the impetus for “Merhaba,” which means hello in Turkish.

Through a course at NYU called Topics in Turkish Culture, Brady met a Turkish producer who had many contacts in the country, and she began to put together plans to make the film in Istanbul. When she realized that it could actually happen, Brady knew she couldn't move further without talking to her father. “I called him and said, ‘Dad, I've been writing a script. It's kind of about you. And I want to shoot it in Turkey.’ He was unbelievably supportive, so flattered that I had written this and very touched that I had explored the topic so intimately.”

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Part of Brady's research for “Merhaba” entailed meetings with the local ALS community in Turkey, including Coskun Özdemir, MD, who runs Türkiye Kas Hastaliklari Dernegği (KASDER), the leading neuromuscular disease association in Turkey, and Ismail Gökçek, a former Turkish footballer stricken with ALS who, with Sükran Balkanli, the wife of another famous player Sedat Balkanli who passed away in 2009, founded ALS-MNH Derneği (ALS-MND Association), which provides support for patients and families.

“They let us film at their facility,” said Brady. “I also got to do some home visits. Dr. Özdemir and a couple of his nurses drove me around to the homes of different people who were in various stages of ALS. I remember one woman in her early 20s who, at that point, could not speak or move and could only blink her eyes. That was the first place I saw an eye communications chart, and understood how people in the later stages of the disease would communicate.” (The experience also prepared her for the time when her father would have to use the same chart to “speak” with her.)

Her experiences with the Turkish ALS community helped to inform the film's focus on how the disease affects the whole family — the patient's struggle with how long to cling to independence and when to acknowledge the need for help, and family members' balancing acts between caring for their ill loved one and leading their own lives. It's a dance that plays out differently in Turkey than in the United States, said Brady.

“What I found there is that the family is always involved. It's unheard of to put a family member with ALS in a facility,” she told Neurology Today. “First, there aren't that many. Even if that were an option, though, you would always stay home and take care of your father, your husband, your daughter. Somebody, or multiple people in the family, would have their lives change to be completely, 100 percent, present for that person.”

Brady's father was never put into a care facility, but it was discussed as an option. “We talked about maybe putting him somewhere where he could have 24-hour supervision, because it was really intense for my mom,” she said. “He was at home until he passed away [in late 2013], but a facility was an option that was discussed within our family. It would never be on the table for most families in Turkey.”

Making “Merhaba” forced Brady to confront many of her fears surrounding her father's ALS. “The disease was progressing as I was writing the script,” she said.

“In many ways it served as a coping mechanism, and allowed me to process and accept what my family would face in the years to come.”

Meeting Turkish patients who were in more advanced stages of the disease than her father was difficult, but helped to eliminate some of the unknown as well. “I realized after that visit that I now understood the disease in a way that my family didn't. It helped me be thankful for the fact that my dad wasn't as advanced yet, to value this time,” she said. “It also made it easier for me years later when his illness had significantly progressed, especially when he started communicating with his eyes. And because I felt safe talking about ALS with other people I was also able to have very candid conversations with my parents and brother about how we were going to face each stage.”

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Although the young surgeon in “Merhaba” ultimately chooses to return to her life in the United States, she knows that she's leaving her father in the hands of family, as he acknowledges he can no longer live on his own in his upstairs apartment, and prepares to move downstairs with her aunt and uncle. Brady thinks that managing neurodegenerative diseases like ALS in the United States could take a lesson from the Turks.

“The US and Turkey differ in our general attitudes towards individualism, and this extends when it comes to caring for sick family members. Turkish families tend to care for ALS patients at home (rather than putting them in a care facility or hiring full time nurses),” she said. “Many Americans put family on the back burner while we seek to develop our careers, travel, and so forth. Every situation is different so I certainly cannot speak for all Americans (or Turks), but I definitely think Americans could learn something from observing the value that Turkish culture places on family and supporting sick loved ones. It is tremendously important to be as present as you possibly can, even when — and especially when — it gets very difficult.”

Brady and her father talked often about using “Merhaba” as a teaching tool. “He suggested that I consider sharing it with different organizations as another perspective on how the disease is treated.”

Asked if she has any lessons to offer to neurologists and neuroscientists treating and studying ALS, Brady said that she can only share her awe of the work that they do.

“I tell stories. At the end of the day, I'm not curing any illness. If neurologists are seeing this film, I would hope that they would take away an understanding of the importance of their work. That may sound obvious, but family members live with the hope that something eventually can be done to find a cure.

“After I published an essay about my father in the New York Times, I connected with a girl who lives a block away from me and also works in film and television. Her father has ALS, and he's just a few years behind where my father was in his progression. All the things she's seeing happen with her father, I know what's coming. And I would love to see it all just stop.”

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•. New York Times essay, “Trapped by ALS, he urged his daughter to fly free”:
    •. “Merhaba,” the film:
      © 2014 American Academy of Neurology