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Documentary shows reality of Huntington's disease

BY JASMINE PUTNEY | JANUARY 29, 2015 5:00 AM

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And the lion’s mouth opens and yer staring at his teeth/And his jaws start closing with you underneath.

More than 50 years ago, these words in a Bob Dylan poem symbolized the struggle of Woody Guthrie and his battle with the neurological disorder Huntington’s disease. Now, this couplet represents thousands of families and the daily struggles they face in the film The Lion’s Mouth Opens.

At 7 p.m. today, W10 Pappajohn Business Building will hold a special screening of the 28-minute documentary.

Director Lucy Walker worked in conjunction with the University of Iowa Huntington’s Disease Society of America Center of Excellence in order to organize the screening. Sean Thompson, the public-relations coordinator for the group, said The Lion’s Mouth Opens was the best documentary he has ever seen.

“Finding out your genetic testing results for Huntington’s disease is, in my estimation, one of the most daunting and life-defining moments a person can face,” he said. “In this film, you see a young woman [filmmaker/actor Marianna Palka] learn her medical fate in this way with bravery and grace that is compelling and inspiring. For a short film, it really has a lasting impact on those who have seen it.”

Combining the symptoms of Alzheimer’s, Parkinson’s, multiple sclerosis, and amyotrophic lateral sclerosis (Lou Gehrig’s disease), Huntington’s affects the functioning of mood, memory, and movement. Vice President of the Huntington’s Disease Society and Huntington’s disease carrier Jamie Parish said she believes the film presents an accurate portrayal of the daunting nature of the disease.

“I tested positive for [Huntington’s] five years ago, and I found when watching the film that Marianna went through the same feelings as I have gone through,” she said.

Parish said she hopes to advocate awareness of Huntington’s disease and its effects in order to better educate the general public.

“I wish people could look at a person symptomatic with [Huntington’s] and say to themselves, ‘Oh, that’s Huntington’s disease’ and not think the person is drunk or choosing to behave in that manner,” she said.

Parish said The Lion’s Mouth Opens also showcases the growing issue of genetic counseling.

According to the National Society of Genetic Counselors, genetic counseling is the “process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease.”

UI specialized care coordinator Shawna Feely has ample experience working with Huntington’s disease carriers.

“I ran a [Huntington’s] clinic at Wayne State University prior to being recruited to UI. Through this, I have worked with hundred of patients and families affected by [Huntington’s],” she said. “And although it is wonderful to see movies such as The Lion’s Mouth Opens being made, there are thousands of other people who have similar stories that don’t get made into movies. I am honored that I have been able to be a witness to some of these individuals’ experiences and share in their process as they make difficult decisions.”

Since débuting at the 2014 Sundance Film Festival, The Lion’s Mouth Opens has won four of eight nominations, including Outstanding Achievement in Nonfiction Short Filmmaking at the 2015 Cinema Eye Honors. It was also shortlisted for a 2015 Oscar nomination. The documentary will be broadcast on HBO May 25 during Huntington’s Disease Awareness Week.

“It’s a gift to those affected by Huntington’s disease that Marianna wants to share this journey with viewers in hopes of raising awareness of [Huntington’s],” Thompson said. “She’s heroic for allowing her personal story to inform and inspire the public about this disease and the real people it affects.”


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