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By Matthew Santamaria (msantamaria@hdsa.org)

As each day goes by fast, the months can go by rapidly as well. Staci Cushenbery grew up faster than most kids her age. Before that, she had the perfect family.

“We had the perfect little puppy dog and I had the perfect annoying little brother I’d asked for but now hated sharing my parents with,” Staci explains. “We spent our days with family and my parents’ friends; everyone says we were the cutest little family and my mom was the sweetest, most devoted mother.”

Then, the days went by and a new chapter started for her family

When Staci was in fourth grade, she found out that her mother was diagnosed with Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

“The day my dad told me is one that still stands out, I can picture the ride from our shop to the house as he confessed the secret and told me mom didn’t want me or my brother to know,” Staci explains. “I can still hear her screams of anger over the secret being out.”

Her grandfather had the disease but it was in the gray area. He would later pass away but he never showed symptoms of the disease.

“She went from Valedictorian to a person who no longer made rational decisions,” said Staci. “By the time we had our answer, my mom was in denial that anything was wrong and for a family new to HD we didn’t realize how tough the road ahead would be.”

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. These include personality changes, mood swings, depression, forgetfulness, involuntary movements, slurred speech, difficulty swallowing, and weight loss.

Her mother experienced these symptoms.

“My mom had been acting funny for several years and we finally had our answer,” said Staci. “Many people thought my mom’s movements or attitude change was due to drinking or drugs.”

As the disease progressed, her family would continue to see a different side of her mother. For example, her brother was organizing a stamp collection and her mother was obsessing at something not related to stamps. She would then yell at him, step on his stamps, and upsetting her brother. This was the first time that Staci physically restrained her mother.

“Another time, I can recall my mom being so angry and obsessed over something (what it was I can no longer remember) that my dad had to come home to help with her,” Staci explains. “I can still picture her on our kitchen floor kicking and screaming while my dad held her down and asked her to stop.”

As the disease was taking a toll on her mother, it was took an emotional turn on the family.

“My mom was trying to parent a teenager who was angry because she didn’t have a “normal” mom and she had a husband who didn’t know how to handle losing his best friend slowly; she had a little boy who was into everything boys could think of. We were all trying to find our place.”

Her father wanted Staci to go see a counselor. This may help people fully understand the disease and what to do to help a HD patient but Staci was not fully honest with the counselor.

“I can still remember this day, when the counselor asked me how I felt, and I lied to her,” Staci explains. “She told my family I seemed to be coping well with everything, I’d completely fooled her. This was the day I decided that someday I’d become a psychologist because people deserved better than the help I’d gotten that day. I wanted to be able to help people not feel so alone and lost and confused.”

As Staci’s role in the family aged her, her brother had his own battles. He dealt with younger kids that did not fully understand what his mother was going through. “Kids’ mean words didn’t stick to me, they did to my brother,” said Staci. “Little kids can be so horrible to others when they don’t understand why someone is different from their definition of normal.”

As emotions continued to rise, Staci’s grandparents learned about HDSA’s National Conventions. This includes getting to know the HD Community, educational workshops, team hope walks, and the convention gala. In 1999, the family went to their first convention.

“This was the first time we’d ever talked with others who were in a similar situation and it was eye-opening,” Staci explains. “My mom’s diagnosis was from a small place in Wichita and after mom’s denial of being sick they quickly gave up on trying to help our family; with no other local resources, we’d been flying blind the last several years. The convention was a turning point for me.”

They would go to the next convention as the youth numbers continued to trend upwards. Eventually, the National Youth Alliance (NYA) was formed. This is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.

“For me, talking with others and bringing in new youth was where I felt like I was helping our HD community,” Staci explains. “With having no local opportunities to fundraise, the NYA’s silent auction and talent show was when I felt I was doing my part. I became a voice. The NYA saved me, the convention saved me, the support online between when I’d see my HD family next-saved me.”

As her mother was in a nursing home, Staci decided to get tested for the disease as 5-10% of at risk patients get tested each year. She knew that each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Staci told only a handful of family members. Looking back, she wished that he told more family members because she would want that support no matter what the result was.

Staci tested negative for the disease.

“I could now think about having kids and becoming a psychologist,” said Staci. “I continued with school and became engaged; I felt like I was finally living out my dreams.”

As she had good news, her mother was still in her battle that she was losing. In January of 2006, her mother was placed in the hospital because of pneumonia and passed away the next month.

“My memories of my mom’s obsessions are now what my best friend and I giggle most about when remembering my mom,” Staci explains. “She loved to make notes, on literally everything, she loved to use her booty to shut all doors, she loved to tan, and she loved rubber bands for some dang reason. The memories others have of her are exactly the person I hope to grow up to be.”

Staci currently lives in Harper, Kansas as she is a step-mother to two children and has two of her own.

“I found my voice because of HD. I learned that family isn’t always defined by blood, but who stands beside you in the darkness. I will teach my kids that what others say about you is not who you are and you’re the one who gets to decide the truth about yourself.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

​To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.