Huntington’s and Hope: Seth’s Story, Part 1

When Seth was twelve years old, he and the rest of his family began to realize something was wrong with his mother.
Seth can remember conversing with her pleasantly, and then her becoming suddenly and inexplicably angry. She started sleeping a lot; taking naps throughout the day, and the way that she walked was changing. Her balance became poor, and when the family was out and about people noticed and stared.

His mother’s gait looked like she had been drinking all day. A neighbor thought she was an alcoholic.

Seth’s mother wasn’t an alcoholic, but the family knew something wasn’t right; they just didn’t know what. The family was in the dark for several years. They had no explanations and the mood swings and outbursts became a constant harsh and unpredictable reality.
When Seth was 15 years old and a sophomore in high school, his family, including his aunts and uncles, sat down with his mother. Something needed to change. They told her she needed to get some kind of help, because they couldn’t continue living the way that they were.

They brought her to be evaluated at a mental health facility. His mother was upset.

“Going to visit her there was tough. I would see the people there and I knew she didn’t belong there. We needed to figure out what was wrong so we could bring her home.” – Seth

One day a specialist there approached the family and asked; “Have you ever heard of Huntington’s disease?”

Seth’s mom came home and things slowly started getting back to normal. His mother and father sat him down and explained to him what Huntington’s disease was. Looking back, he’s not sure that his parents fully understood the disease themselves at the time. Seth turned to the internet to learn more.

“The symptoms fit my mom exactly. Then I saw there was no cure, and that the life span after diagnosis was 20 years. I didn’t want to accept it. I was angry. What did we do to deserve this?” –Seth

He was eager to make it through his last two years of high school. He was embarrassed to have friends over. He didn’t talk to anyone about his mother’s diagnosis and he hated when people stared at them. Sometimes he would stay at a friend’s house to escape his reality at home. He couldn’t wait for college.

Seth began college only an hour and a half away from home. He had his space but knew he could come home if he needed to. He did more research about HD then, looking up symptoms and reflecting on what he had seen in his mother. He felt guilty about some of the ways he treated his mom while he was in high school. He knew that when she acted so angry it wasn’t really her, it was the disease.
He decided to get more involved. He put on his own three on three charity event in his hometown for three years while being a full time student. It felt good to raise awareness, to make a difference.

Seth couldn’t stop thinking about whether or not he should get tested for HD himself. He knew there was a 50% chance that he inherited the condition from his mother. It’s a big decision but Seth is a self-proclaimed planner. He liked to plan ahead and he knew that the test results would affect his future. Before his family was aware of the world of HD, he could picture having a family of his own one day without any contingencies.

He knew if the test came back negative he would have survivor’s guilt but in the meantime he was worrying. How could he know, when he dropped a cup, or forgot a word, if it were nothing or if it were the beginning of HD?
He decided to call his aunt and sister to mull over the decision and they both suggested postponing but, at 20 years old, Seth decided he wanted to know.

The test came back positive.

Though Seth tested positive for HD, he was not diagnosed with it. Individuals are not diagnosed as long as they are pre-symptomatic.

“When I got the results I knew I had two options, not do anything and be angry, or I could use the results as motivation to get more involved and do everything I could to make a difference.”- Seth

Seth decided not to tell his family that he tested positive right away, but he did decide that he would channel his test result into motivation.

Seth joined a local chapter for HD and a youth organization, and then became president of both of them. He continued to organize fundraising events and promote awareness. As he was volunteering he saw a larger vision. He then lost two close friends who inspired him deeply.

He took a step back and reevaluated some of his personal decisions in his own journey.
He told his sister and his father that he got tested but sheltered his mother from the news. It was a weight off his shoulders that his family members knew, but his mother continued to decline. It was incredibly difficult for him to watch as his mother’s condition worsened until she passed away. Connecting with other people in the HD community was invaluable to him.

He wondered how he could share his story and also connect other people to resources, support, and one another.


Check back soon to read part 2 of Seth’s story.

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