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Ice Bucket Challenge a Splash for Local Woman with ALS

Niki Morris
Emily Reddy
/
WPSU

New online videos for the ALS ice bucket challenge are drying up. But the viral challenge raised more than 110 million dollars for the neurodegenerative disease, which is also known as Lou Gehrig’s Disease. It's also raised hope for Niki Morris, who has ALS.

At her home in State College, Niki talks about the ALS ice bucket challenge and what it's like to have the disease through one of her aides, Katie Snyder. I sent Niki questions ahead of time and she has painstakingly pecked out answers on her computer. She uses a mouse to click the letters one by one on a virtual keypad on the screen. Snyder reads off Niki’s thoughts on ALS.

“Having ALS is like continually mourning with every new loss," Niki has typed. "It is letting go of future dreams of grandchildren and life in general.  It’s letting go of privacy and dignity and comfort. I drool, I need help cleaning my nose, plucking stray hairs, moving my limbs, it’s humiliating and degrading.”

It was May of 2011 when Niki noticed her left pinky wasn’t moving right. Tests several months later confirmed her suspicion that it was ALS. Paralysis progressed from her pinky to her left arm and leg, then to her right side and her mouth. She’s now in a wheelchair and her body continues to fail.

“Last night a spasm put my hands in fists and I couldn’t move my arms enough to drag my fingers open and I realize another thing is gone," writes Niki.

The average survival time for someone with ALS is 3 to 5 years. Niki has had ALS for nearly 4 years.

Niki says she’s thankful for her parents’ financial support, which enables her to hire aides like Snyder.

Before she developed ALS, Niki worked in the Department of Development and Alumni Relations at Penn State while raising two daughters alone. Her younger daughter, Carissa Lenker, just turned 15. She says ALS has actually brought the family closer together. And the ice bucket challenge has spread understanding of the rare disease.

“Say if I told you about ALS last year, you wouldn’t know what it was," says Lenker. "It touches my heart to see people doing both, charity and the ice bucket challenge.”

Back when she could still talk well, Niki made brief recordings for her loved ones.

“Aletta, I am so proud of you," she says in one. Others say, "Hey, Kiddo. How was your day?," "Love you Carissa." and "Love you Beeta."

And you get an idea of Niki’s sense of humor that she also recorded this quote from Yoda: “Do or do not. There is no try.”

Niki can still talk, but her family is having a harder time understanding her.

“It’s been ….I’d have to say sort of very roller coaster like,” says Niki's sister, Karen Morris. “There are times when you kind of get used to what’s going on and it’s kind of just plodding along and then the plateau will end and she’ll go downhill. And it’s something else to acclimate to. And you realize wow a year ago she could do something she can’t do now.”

Karen says friends have been asking her more questions about ALS because of the ice bucket challenge. She hopes it will help raise awareness about the disease and raise money to help make life easier for those with ALS. 

Karen did the ice bucket challenge herself and says she’d dump freezing cold water on her head again even in the middle of winter if it helped somebody. But she doubts the money comes in time to help Niki.

“I see this being helpful for people in the future," says Karen. "Other people who have to go through this. Do I think this money is going to have an impact directly on my sister? No, but that doesn’t make it any less important to me.”

There's one outcome of the ALS ice bucket challenge that's certain. It's made Niki the happiest she’s been in years. Her little known disease is finally getting some recognition.

As I’m about to leave, Niki types out a message and says it out loud as well.

“Thank you for letting me talk,” says Niki.

Emily Reddy is the news director at WPSU-FM, the NPR-affiliate public radio station for central and northern Pennsylvania.