Local adaptive athlete carves through disability
Raising money for Nationals
Nick is raising money to get to Nationals. Please contact NSCD to help. 970-726-1540
Imagine rolling out of bed one morning when you realize that something about your body just isn’t quite right.
There’s a numb, tingling sensation in your hands and feet, or maybe your right arm just doesn’t respond to neurological cues like it should.
The next day, your vision is failing and you’re having trouble swallowing. The following day, you can’t control your bowels.
Time goes on, and each day you’re greeted with a different, terrifying symptom.
One day, you can’t get out of bed at all.
Years Pass. You visit doctor after doctor, but no one can tell you what’s wrong with your body. Neurological tests and examinations are inconclusive.
People, doctors even, say you’re faking it.
But you’re not.
To you, it probably sounds like the plot of a psychological horror film.
But to hear Nick Manely recount it from his own memory, the mind is sent reeling, the conscience digging for some familiarity of experience, something to relate to.
It comes up empty-handed.
Like any other debilitating neurological condition, the reality of life with Functional Neurological Disorder is as distant to most of us as a Hollywood screenplay.
FND is a widely misunderstood and often mischaracterized condition in which patients display the functional symptoms of neurological conditions like multiple sclerosis and Parkinson’s – chronic pain, paralysis, weakness, involuntary movements – without the physical changes in the brain that are pathologies of those diseases.
As some neurologists describe it, an FND patient’s brain is structured normally but functions incorrectly.
For this reason, it’s often difficult to diagnose.
Manely’s nightmare started in the summer of 2009 when he was 54.
“The summer of 2010 was really hard for me,” Manely said. “I had no control over my body. I really couldn’t walk around the block, so in October I called Pat Campanella at (National Sports Center for the Disabled) and said, ‘this is my situation. I need to get off the couch, and I need to relearn how to ski.”
Manely said it was thoughts of his family – his wife, two sons and daughter – that motivated him to start skiing again.
Tommy Moore, program coordinator with Steamboat Adaptive Recreational Sports, was an adaptive ski instructor with NSCD during Manely’s first season.
“Nick came in and they wanted to put him in a sit ski,” Moore recalled. “That wasn’t really the intention that he had. He and I kind of went off in a corner by ourselves and talked about what his goals were, and his dream was to stand up and ski again with his family, so I told him I would make it happen.”
As Manely trained, he continued to seek treatment for his symptoms, but doctors couldn’t give him any answers.
“It’s really hard to explain,” Manely said of his condition. “When your brain shuts off your body, it shuts off your body like a switch – that’s how the doctor explained it. And I have no control over that switch.”
Doctors tried to address it psychologically, telling Manely that the symptoms were psychosomatic – that he was causing them himself.
“It really pisses you off and makes you go into a black hole of depression that’s just beyond darkness,” Manely said. “It’s darkness beyond darkness.”
Tests showed his symptoms were real, but the underlying cause remained a mystery.
“You have a walker and a cane, and they say you’re faking it,” Manely said. “Why would you fake a walker and a cane?”
On the slopes, Manely set his sights on the 2014 Winter Paralympics in Sochi, Russia.
“I said, I’m not 100 percent that I can get you to Sochi, Russia, but I can get you to Nastar nationals if you want to do that,’” Moore said. “I didn’t know what he doctors were going to allow us to do.”
Manely didn’t make it to Sochi, but he did ski in the Nastar nationals.
“You kind of see people who rand to be an athlete and you see people who can be, and he’s one of the guys who can be,” Moore said. “Nick is that guy. He has what it takes to be an elite athlete, which is always the next step, and he has the drive, and he has the motivation, and he has the work ethic to be that athlete.”
After that, the NSCD invited him to race with its competition team. Manely got new boots and orthotics from Jacques Thomas at Le Feet Lab in Winter Park. Volkl and Marker sent him new skis, bindings and polls, and Manely started skiing slalom and giant slalom.
“I probably shouldn’t have been on the hill, but my motivation again was my family,” Manely said.
Doctors at the Stanford Neurosciences Institute finally diagnosed Manely with FND on Jan. 7, 2015.
He continues to struggle with the condition. Summers are especially hard on him, he says.
The heat wracks his body, and each winter he has to relearn to ski, but he continues to do so.
“The biggest thing with skiing for me is it’s probably the deepest form of cognitive brain therapy you can do,” Manely said. “You’re always doing things without thinking about doing them, so you’re always regenerating your nerve pathways.”
Moore recently invited Manely to travel to Steamboat Springs to help him coach, which he will do later this month.
“For me, I think it’s a big deal just seeing one of the great inspirational athletes of my life coming back and coaching with me,” Moore said.
Manely said skiing has helped him accept his condition and progress through it.
“You can’t love everything and you and not love yourself,” Manely said. “The mountain is a healing place for me. It’s a magic mountain. Winter Park is a magic mountain, but the mountain itself, and skiing, is a very healing place for a lot people.”
Hank Shell can be reached at 970-557-6010.
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