When Bryan Hill stopped moving the left side of his body as much, he didn’t really notice it. His mother, Vicky, had young onset Parkinson’s disease and he knew that made him more likely to develop it. Still, those thoughts resided in the back of his mind. Then his wife, Julia Horner, said she noticed symptoms.
“I met that statement with immediate denial,” Hill, 35, an intensive care unit nurse at UW Medical Center in Seattle, told TODAY. “For about a good six months, I denied it and I really avoided the topic.”
But he saw a video of himself and observed what Horner had spotted.
“I am not really moving the left side of my body. My left arm is very stiff and I have a little twitch above my lip,” he said. “I probably would have never noticed.”
After grappling with feeling "awful" after his diagnosis, Hill wanted to do something — so he started training to be an American Ninja Warrior.
“There’s no way I would be on 'American Ninja Warrior' if it wasn’t for Parkinson’s, which is a weird thing to say,” he said. “It motivates me to get up every day at 5 a.m. and do an hourlong workout. Parkinson’s is the driver in my motivation to keep moving because the movement is so important for my body and the disease process.”
Growing up surrounded by Parkinson’s disease
Growing up, Hill was keenly aware of young onset Parkinson’s disease. His mom, Vicky, was diagnosed with it in her early 20s. He remembers the looks when they went to the grocery store.
“I only knew my mother with Parkinson’s,” he said. “People would just kind of stare at my mom because it’s this young person who is moving in some awkward way with the dystonia and dyskinesia.”
Dystonia and dyskinesia are involuntary movements that people with neurological conditions sometimes make. It could look like a tremor or repetitive sort of motion. Hill’s mom had fewer medical options.
“A lot of doctors didn’t know what they were treating,” he said. “That whole era was a way different experience than I feel than what I’m experiencing now. People like Muhammad Ali, Michael J. Fox, the people who are big public figures who have had it and educated the public about it.”
As a nurse, Hill knew that young onset Parkinson’s disease had a genetic component to it and that he and his sister might be more likely to develop it. But still he didn’t notice the changes until Horner pointed it out. Soon after he received the diagnosis.
“It was awful. It was like my world was coming down on me. I’m this young, 30-year-old person. It was a month before our wedding and I’m about to get married and starting this exciting chapter ,” Hill said. “I get this diagnosis that like, ‘Wow, this really will alter the way I live my life.’ And it has.”
At the time, they didn’t tell anyone about Hill’s diagnosis. But when Horner got pregnant, they decided they did not want their son, Forrest, to be burdened with the secret of Hill's condition. So they shared it with friends and family.
“The support that was given to us was just unbelievable,” he said. “It was more than I could have anticipated and predicted.”
Hill always enjoyed camping, hiking and rock climbing and didn’t plan on stopping. But instead of doing it just for fun, he decided to train for competition, in part, to help manage his symptoms.
“It’s more functional and getting that heart rate up,” he said. “I’ve been really kind of focusing on my movement, fine and gross motor skills.”
Young onset Parkinson’s disease
About 1 million people in the United States have Parkinson’s disease and most people with it receive their diagnosis in their 50s or later. About 4% of people will receive a diagnosis of young onset Parkinson’s disease, according to the Parkinson’s Foundation.
Symptoms of young onset and Parkinson’s are similar. They can include:
- Stiffness and rigidity.
- Slow movements also known as bradykinesia.
- Gait or balance problems.
While receiving a diagnosis of young onset Parkinson’s disease can feel devastating for someone under 50, the symptoms often develop at a slower rate and people tend to live longer, according to the Parkinson’s Foundation.
Managing medications and training schedule
Hill has learned to manage his medications and training schedule so he can keep up with the intense amount of exercise he does.
“I look at my agenda and I map where I need to be on and fully function,” he explained. “I live my life in three to four hour windows.”
That means he takes his pills a little bit before a workout session so he’s at his “peak functioning” as he trains.
“It’s definitely a mind game,” he said. “But it really helps me plan my day out.”
He learned how best to manage his medications from his experience as a nurse and chatting with others with Parkinson’s. His mother didn’t have the same treatments available and she charted her own path by undergoing an experimental brain surgery. Doctors told her that would give her about 10 years to raise her children and send them to college. They were right.
“The disease came back and it took storm and really ravaged her body,” Hill said. “But she got those 10 years to raise us and that was her priority.”
She died 10 years ago at the age of 57.
Hill decided to pursue being an American Ninja Warrior after feeling inspired by Jimmy Choi, who was on the show for several seasons and has Parkinson’s disease. Hill reached out to Choi and they began chatting.
“He’s like, ‘I’ve been looking for someone to take my spot and I really think you’re the guy for the job. I’ll teach you everything I know,’” Hill recalled. “He’s really become a great role model for me training for 'American Ninja Warrior' but also dealing with young professional life, family and stuff outside of physical activity.”
Having Parkinson’s disease changed Hill’s perspective.
“It really made me discover what I really care about,” he said. “I benefited so much from hearing others speak openly about their bravery, really talking about their struggles openly. I want to give back what I benefited from others and hopefully raise awareness of Parkinson’s.”