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Fighting time and genetics
One student uses life story to raise awareness on rare disease
October 20, 2015
Brittany Butler is telling her family’s story.
The Northern Kentucky University nursing student describes a normal routine of challenging classes and family dinners.
But a rarely spoken fear hung in the background. Would the disease that took the lives of Brittany’s aunts, her grandmother and her great-grandmother strike her mother as well?
“In her early forties, she started showing symptoms,” Brittany said. “We were in denial. We were hoping she didn’t have it, so we ignored it.”
In 2007, her mother got the news she and her family had feared. She was diagnosed with Huntington’s Disease. The news stunned the happy family.
“This devastating thing happened to us and it changed our world entirely,” Brittany said of her mother Linda’s diagnosis.
She tells her story, knowing all too well that she and her sister Whitney Mitchell may also be carrying the same disease that has affected so many of her family members.
Brittany’s goal is to change the ending of this story.
Huntington’s Disease is a progressive brain disease that robs the afflicted of the ability to perform basic daily functions, eventually taking their lives.
Brittany started her Honor’s capstone project to both assess nurses’ knowledge about the disease and increase educational awareness. Dr. Erin Robinson, a member of the nursing faculty at NKU, has helped advise her on the project.
Part of the project was a video that detailed how the disease affected the family. It used a photo slideshow to display Linda Butler’s progression from pre-Huntington’s Disease to the present.
“When she showed it in our faculty meeting, there was not a dry eye in the house,” Robinson said.
Brittany said the video was important to take the disease out of a medical textbook and give it an identity.
“I just know that when I learn about something or when I hear about something, and it’s like a disease … I just see it as a disease,” Brittany said. “I wanted to put a face to that disease. I wanted to show people that my mom had an entire life before this disease hit her.”
Robinson struggled to fight back tears when talking about Brittany, her family and her project.
“It’s a really emotional subject,” Robinson said. “In the health profession sometimes we walk with a patient but we can’t walk for them. I cannot bear the weight of every cancer patient. I can’t bear the weight of every multiple sclerosis patient that I have.
“When you have a student that you’re connected to, and you see how important it is to her, it’s a very moving experience.”
When Linda started showing symptoms of Huntington’s Disease, the family still hoped she wasn’t afflicted.
“She’d drop things here and there,” Brittany said. “She would be a little more klutzy.”
Linda’s symptoms became so bad she nearly lost her job. She was diagnosed with the disease at the age of 47.
Brittany said they took care of Linda at home for the first three to four years after diagnosis. She even moved back home to help. Her condition finally deteriorated to the point where taking care of her at home was too dangerous for Linda.
“The last straw was when she fell and ended up getting 13 staples in her head,” Brittany said. “She had a head laceration.
“I told my dad, and said, ‘This was a very dangerous environment’. He looked at me and said ‘I can’t put my 50-year-old wife in a nursing home. I just can’t do it.’ I had worked in nursing homes before. I said, ‘Let me do it. Let me find a nursing home.’”
In an eight-year period, Linda went from walking into Colerain Township’s Burlington House to barely being able to communicate.
“She came in walking,” said Matt Moeddel, director of nursing at Burlington House. “I’ve seen her go through the stages of … falling and eventually being in a wheelchair.”
Brittany says her mother is in the late stages of the disease, one that she knows will eventually take her mother’s life, short of a miraculous cure being discovered.
Brittany herself knows the same fate could await both she and her sister. Genetic testing will someday determine this fact. They will take that test, just not right now.
“I will get tested,” Brittany said. “I can’t handle it now. I know my limits. I’m trying to get through school.”
The results of the test will not only affect Brittany’s future but decisions about starting a family.
“I want to get tested before I have kids,” Brittany said. “If I have it, I want to adopt. There’s some other ways to have children. They just have to test the egg and use the eggs that don’t have it.
“But I don’t want to do that because that’s like $20,000. I’d rather put that towards an adoption.”
Many people know very little about Huntington’s Disease, which more than 200,000 Americans are at risk of inheriting.
These staggering numbers and lack of education made Brittany decide to do something.
During the capstone project, nurses were first given a pretest on the disease. They were asked about their experience level and how familiar they were with the disease. They were then tested with specific questions, including what the disease was, what body system it affects, what symptoms are present and how to treat the disease.
Brittany then used a PowerPoint to educate nurses on the disease. After the presentation, the test was given again. The results showed Brittany’s lesson was effective.
“It really did help,” Brittany said. “Their average went from a 63 percent to a 78 percent.”
While the better-known neurological disease Amyotrophic Lateral Sclerosis (ALS) had the ice-bucket challenge, Huntington’s had a pie-in-the-face challenge. A charity walk was held Sept. 26 at Joyce Park in Hamilton, Ohio.
Balancing the challenges of being a student, caring for her mother and planning her future keep Brittany busy. She credits her faith with helping her keep balance in her life.
“Honestly, by the grace of God,” Brittany said. “I’m very spiritual, so I pray a lot. I’m very passionate about what I do so it doesn’t feel like work. It’s kind of like, you either sink or swim, so I just have to do it.”
Knowing that Huntington’s Disease could be in her future has changed the way Brittany looks at her own life.
“I literally live my life, or I try to, like it’s my last day,” Brittany said. “If I do have it, I have to hurry up and live my life. I have to live 80 years in 50 years. If I had to be in a wheelchair all the time, I really wouldn’t mind that.
“It’s not the physical part, it’s the losing my mind part. I don’t want to lose my mind. I’m scared of losing my mind and not having control over stuff. I put $50,000 worth of higher education in this brain. I don’t want to lose that.”
Not only is Brittany fighting the disease for her future and her sister’s future, she is fighting for her mother. As the capstone video closes, the final text on the screen says, “We are not giving her up without a fight.”
Those who have been there to help the family cannot help but be impressed by the spirit of the Butler family.
“I think her whole family taught you what it is to love somebody even though they are in that difficult situation,” Moeddel said. “My entire staff sees them on a regular basis. They think that their whole family is incredible.”
The way Brittany’s father Jeff interacts with his wife especially touched Moeddel.
“It would be very easy to be like, ‘I can’t deal with this mentally,’” Moeddel said. “’This is my wife, she is not the same person that she used to be.’ I’ve seen people do that in my building. And they don’t. They’re with her constantly. They love her to death.”
Betty Butler is Brittany’s grandmother on her father’s side. She has been a caregiver for Linda – she even refers to Linda as “her daughter.” She too is impressed with the way Brittany has fought the disease.
“She just works so much on this and puts herself into it so much,” Betty said. “I’ve learned how much it means to her for her mom and for others. It just amazes me and made me see how much she really cares.”
It only takes an appearance at the Burlington House by Brittany or her father to brighten Linda’s day.
“Linda will be having a quiet day,” Betty said. “You don’t know if she’s tired; she can’t tell you … or if something is hurting her or bothering her. Brittany can walk in and she just lights up.”
Betty said Jeffrey always has something special for his wife to help brighten her day.
“Jeffrey always has a story to tell her,” Betty said. “He’ll tell her when the girls were small and the things they did and he makes it real dramatic and he makes it real funny. She just laughs and laughs. She just lights up and it just makes her day.”
His part of the fight is making her laugh and bringing her joy. It doesn’t make seeing her in that condition any easier.
“He said, ‘Mom, I don’t think I’ve ever left there when I wasn’t crying,’” Betty said. “Through all this and him seeing her like she is, he still gives her some hope and gives her a laugh and makes her day. The whole family does. The whole nursing home is good to her.”
“They’re like family,” Brittany adds.
Brittany hopes that her story can have the same effect that Jeff’s stories have, but on a long-term basis. She will continue to work toward a happy ending for all Huntington’s Disease patients.
“I want to spread awareness,” Brittany said. “I want to get my story out there to spread awareness. I have a story to tell, so, this is one way of doing it.”