VIRGINIA BEACH, Va. (WAVY) – Katie and Joanna Nicholson remember August 13, 2008 clearly. That’s the day doctors diagnosed Nick Nicholson, Katie’s father and Joanna’s husband, with ALS.
“I knew there was nothing you could do about it,” says Katie.
“You’ll slowly see your loved one lose everything. And the sad part about it is, their mind is still intact,” Joanna says. “There’s no known cause, there’s no effective treatment, and there’s no known cure, it’s always fatal.”
When a person has ALS, the brain slowly loses its ability to control muscles in the body. For Nick, it started in one foot, and spread upward to the rest of his body.
“He stopped being able to eat without choking in 2010,” Katie says. “Then he got a feeding tube and got the [tracheotomy tube] August 17 of 2011.
Today, Nick can no longer move his head or speak. He can smile, and his family and nurses seem to read his eyes to understand what he’s feeling or thinking.
Still, the Nicholsons consider themselves lucky, because Nick’s a Navy veteran. The VA covers the medical costs of ALS because some research shows a connection to military service.
The disease financially cripples other families. Joanna says funding for them is just part of what makes the Ice Bucket Challenge so important.
“From a more emotional point of view, it’s got us out there. I [would] drive around with a sticker on the back of my van and people say ‘Who’s Al?’” she says. “What I’m hoping is that it’s not a flash in the pan, that the association and the chapters take this and build on it.”
The Nicholsons watched as friends at Jazzercise in Virginia Beach did one big ice bucket challenge, which raised more than $1,000 for the ALS Association.
It’s not the only one they’ve seen, and it probably won’t be the last.
“We went down to Waterman’s and saw all them do it,” Katie says. “We had my mom outside of his window so he could see her.”
Every bucket challenge helps the Nicholsons, not just because of funding or awareness, but because smiling is just about all Nick can do anymore.
“He got a good laugh. He thinks we’re all crazy,” Katie says of her dad’s reaction to the challenges. “It’s just really fun. I don’t want it to end.”
Katie helps other families who have loved ones newly diagnosed with ALS.
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