- The Enterprise
- The Recorder
The goal is to inspire.
About eight years or so ago, Cathy Taylor started giving annual presentations about Huntington’s disease in the AP biology classes taught at Leonardtown High School by her close friend and colleague, Patricia Teague. Taylor teaches special education at the school.
A couple of years later, Taylor’s father, Fred Lothrop of Leonardtown joined his daughter in the presentations.
The presentations are personal — Linda Lothrop, Fred’s wife and Taylor’s mother, was diagnosed with the disease in 1996, and Taylor tested positive for the disease about 11 years ago. A child of a person with the Huntington’s has a 50 percent chance of also having the gene abnormality that causes the disease to develop.
At the point in the school year when Teague’s advanced science class is talking about DNA and heredity, a class period is set aside to hear about this real-life result of heredity. Huntington’s, a disease characterized by nerve cell degeneration in the brain, has been described as having Alzheimer’s disease, schizophrenia and Parkinson’s disease all at the same time, Lothrop said.
“It’s kind of like your brain atrophies,” he said.
As the students in Teague’s first AP biology class of the day started arriving on March 9, Taylor and Lothrop said they were telling their story as a way to recruit help with the disease.
Family members of people with health issues often devote themselves to raising funds for research. The Lothrop family is working to raise up the actual researchers.
“My goal is to catch even one of the kids’ attention, so they get involved in medical research,” Lothrop said.
Linda Lothrop, now 73, had no idea that Huntington’s disease ran in her family. A registered nurse, she was diagnosed 16 years ago after a series of falls. One of the early symptoms of the disease is problems with balance. Other symptoms include moodiness, irritability, psychosis, abnormal and unusual movement, dementia, unsteady gait, personality changes and loss of memory and judgment.
Working with the Huntington’s Disease Center of Excellence at Johns Hopkins in Baltimore, Taylor opted to get genetic testing 11 years ago, and discovered that she also has the genetic defect that triggers the disease, usually when the person is in their mid-30s and 40s.
“It’s a given we both will end up in a nursing home,” Taylor said of herself and her mother.
Now 45, Taylor said she has begun exhibiting symptoms, like balance problems and just understanding subjects that used to be easy for her, like British literature. She plans to apply for disability and end her teaching career after this school year.
There is a great deal of stigma attached with Huntington’s, and Taylor shared some of the concerns that affect those with the disease and often keep them secretive about it. Can you get insurance? Would you want to hire someone who tested positive after genetic testing? Would you marry someone who tested positive or who is related to someone with Huntington’s?
“I am out of the HD closet,” Taylor said before the presentation. “I think it is important to educate others and get publicity ... People need to know they are not the only ones.” She noted that the incidence of Huntington’s is estimated at about one in 10,000 people. So, in a county the size of St. Mary’s, which has just over 100,000 residents, there could be about 10 people in the county with the disease.
“You have two choices in life ... be upset or laugh about problems,” she said.
In Lothrop’s part of the presentation, he had the students participate in several tests of mental dexterity to give them an idea of what living with Huntington’s and decreased mental capacity is like.
“Your whole world slows down,” he said.
The activities were challenging and demonstrated that recalling information can be difficult. For instance, he asked them to all draw a picture of the front and back of a penny. “It’s kind of tough, isn’t it? And you’ve got all your brain cells,” he said to the students who were laughing at their performance. “Day-to-day activities are very, very difficult for someone with HD.”
Linda Lothrop still lives at home, but requires 24-hour-a-day care. Fred flashed a PowerPoint slide, showing his wife in a wheelchair.
“There’s no silver bullet right now,” Lothrop said of the help that is available to his wife.
He said some of the current focus of research is on inhibiting the Huntington protein. “If you’re going to go into research, that’s a good area to go.” Gene therapy and replacing molecules in the brain are other areas that scientists are studying, he said.
Teague said that the annual Huntington’s presentations have worked well with her curriculum. “I’ve had students interested in genetics and biochemistry careers, and this gives them something to focus on,” she said. One student, in particular, she remembers was so moved that he worked his way through school to get a doctorate and does, in fact, do medical research now, although he has chosen to study asthma, she said.
Andrew Dewey, a senior at LHS who heard the Huntington’s presentation last year and who now serves as the aide in Teague’s class, said he well remembered last year’s presentation.
“It was definitely cool to hear the human aspect of it,” he said. “It definitely put more interest in the real life aspect of genetics ... a human level.”
Lothrop said he hopes the presentation inspires the students.
“My goal is to get one or more of you energized to go into this field ... What I would like to see is all of you get into medical research somehow. I think that’s where the answer is,” he said. “Hopefully, we’ve left you with something to think about.”