"Having the sense of the unknown my whole life and going back and forth psychologically to plan a life you don't know exists, when you don't know what your road is, always vacillating. If I have it what does [life] it look like and if I don't, what does it look like."
An estimated 30,000 Americans live with Huntington's disease, one that affects their ability to walk, to think and to regulate their mood. But an even larger group – about 250,000 – are, like Palka, at risk, but symptom-free.
Huntington's is an autosomal dominant disease caused by the presence of a mutation in the length of the Huntington protein. The child of a parent with the mutation has a 50-50 chance of inheriting the mutation and the disease.
"It actively affects the biological processes of your body throughout your development," said Louise Vetter, CEO of the Huntington's Disease Society of America (HDSA). "Science has come to understand that the body compensates for a certain amount of time for the neurons that are dying."
"It will hit you at some point," she said. "The difference depends on the length of the mutation. Through genetic testing you are actually being diagnosed. Unlike the vast majority of test, this is not a risk factor. You have this in your body and it's just a matter of time."
Depending on the length of the repeat on the gene, the onset of the disease could be anywhere from the 70s down to the 30s, or earlier, according to Vetter.
"It was absolutely an incredibly brave and courageous act … to be prepared to deal with the deck that's dealt," said Vetter of Palka's decision to get the genetic test. "Typically, the decision comes when young couples think about planning a family. … It takes a proactive and special kind of person to say they are prepared for whatever they learn and know they can handle this."
Palka wrote, directed and starred in the award-winning 2009 film, "Good Dick," with Charles Durning and Tom Arnold. Her other co-producer and co-star in that film, Jason Ritter, is one of the close friends who supports her through Walker's latest documentary.
Ritter's own father, actor John Ritter, died of an aortic aneurysm at the age of 54, and so he has shared his fundraising experience with Palka to help find a cure for Huntington's. She calls him, "my family."
They have also supported the legislative efforts of HDSA to fight discrimination and to secure equal rights to medical and disability benefits.
At the heart of Palka's story is the support of a close circle of friends who help prepare her for the doctor's visit and accompany her to learn if she has Huntington's, test results that will not be revealed here.
"Lucy's film is built around a decisive moment of genetic truth that everyone in Marianna's family and close circle of friends fear the most," said Judith Helfand, creative director and co-founder of Chicken & Egg Pictures, which provided the grant for the film.
"The incredible trust she has for them, can be felt, in every corner of the frame, and by extension, in the trust she has for director Lucy Walker," she said in an email. "Soon the audience is a part of this extended family privy, in real time, to the most intimate and terrifying line in the sand, life before-life after moments."