Growing up, Nick Gough’s mother, Margie Gough, never revealed to her family that she had Huntington’s disease. Gough and her siblings believed that the personality changes she had undergone were exactly who she was. When she exhibited involuntary movements, had convulsions or seemed drunk, they wondered if she had Parkinson’s disease. But as her symptoms worsened, the now grown children learned why Margie Gough behaved the way she did: she has Huntington’s disease.
“She was trying to protect us so we didn’t know that,” Gough, 39, of Mount Sterling, Kentucky, said today. “We didn’t really think about it and then, as she started to age, her symptoms got worse.” Gough went for genetic testing and learned he had the gene for Huntington’s disease. He recently started hiking the Appalachian Trail, despite showing some symptoms, to raise awareness about the disease.
“I just want people to understand what (Huntington’s) is,” he said. “It was impacting my family and I just want people to know more about it.”
A damning diagnosis
As Margie Gough got older, her behavior seemed more erratic. She swerved while driving and people often thought she had a drinking problem.
“People would think she was drunk,” Gough said. “Like she got arrested for DUI, but she’s sober.”
She suffered from chorea, which are clumsy, jerky involuntary movements that can be a symptom of several conditions, including Huntington’s disease. Then his seizures got worse. A family friend revealed to Gough and her siblings that Margie Gough had Huntington’s disease.
At the time, Gough was in the military and he was worried about getting a genetic test to see if he had it. He wasn’t sure if it would impact his career or even his ability to get health insurance. According to the Huntington’s Disease Society of America, children whose parents have Huntington’s disease have a “50/50 chance” of also having the gene that causes it. Gough went for anonymous testing and found he had the gene.
“It was a shock. It’s rare, so you think, ‘What are the chances?’ “, he recalls. “We were tested because we want to be able to prepare and plan for the future.
While in shock over the results of her genetic test, Margie Gough’s condition deteriorated. She cannot leave the house often and has problems with temper and irritability. The guards help him around the house.
“She’s hard to be around,” he said. “We’re all close so we can come and see her, but it’s always difficult.”
When Gough’s symptoms started to appear, he realized he needed to find another job. As an army major, he didn’t want his health to impact his job, and he underwent a medical separation to retire from the army.
“I always thought there was something wrong with me because I was depressed. I started to feel apathetic towards a lot of things. I felt like I was developing ADHD I know that sounds weird,” Gough said. “Then when I found out we had Huntington’s disease in the family, I started to make the connection.”
What is Huntington’s disease?
Huntington’s disease is a progressive genetic disease that occurs when a mutation in a gene, huntingtin, causes brain damage, according to the Huntington’s Disease Society of America. Huntington’s disease causes people to experience physical, mental and emotional problems. Common symptoms include:
- Chorea, movement or gait problems
- Bad mood, irritability
- Bad judgment and choice
- Speech difficulties, including speech impediments
- Swallowing problems
Although there is no cure for Huntington’s disease or therapies that prevent it from progressing, there are treatments that help people manage some of the symptoms.
Gough takes prescriptions that help with her mood swings and also reduce some of her movement issues.
“I’m on a drug that helps relieve my anxiety, depression and apathy and it’s linked to chorea,” he said. “If I take my medication, it’s really helpful because I’m much more optimistic. I feel more normal. I have less chorea and it allows me to help more.
Hike the Appalachian Trail
Gough was still fit after being in the military, so he didn’t have to do too much to prepare for the trek. Although since he started hiking, he realized how important a day off was to his ability to complete the Appalachian Trail, which runs about 2,200 miles from Georgia to Maine. He hopes to be finished in six months.
“I’m in it around 8 or 9 and moving until about 4,” Gough said. “I had no idea the terrain would be so rocky. I knew it was mountainous but I had no idea it would be so continuously mountainous.
Realizing he needed to take breaks was an adjustment he had to make from the start.
“I have to do a pretty good job of resting while I’m doing it or I won’t be able to finish it,” he said.
Although exercise helps reduce the severity of Huntington’s symptoms.
“They find that people who move more are just better off later in life,” he said. “That’s one of the reasons I stay active.”
The mental aspect of hiking alone for months can seem difficult, especially because Gough’s girlfriend Cat, who has cystic fibrosis, is back home. He hopes people will consider donating money to the Huntington’s Disease Society of America to better fund research into treatments and cures. Although it can be difficult to have such a difficult condition, Gough is grateful to have reunited his family.
“I’m optimistic. I think we’re stronger because of that,” he said. It’s not just weird idiosyncrasies or weird quirks, she has an illness that has changed her personality.