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Beyond the Ice Bucket Challenge: Woman battles ALS while inspiring others

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Shirley and Ed Schmelzle, provided photo. Shirley and Ed Schmelzle, provided photo.
Shirley uses her iPad to communicate, relaying here the difficulties she faced after her diagnosis in 2009. (FOX19) Shirley uses her iPad to communicate, relaying here the difficulties she faced after her diagnosis in 2009. (FOX19)
Shirley and Ed Sunflower founded the Open Golf Scramble, which has raised more than $75,000 for the local ALS Association chapter, and they say the Bucket Challenge donations have been overwhelming. (FOX19) Shirley and Ed Sunflower founded the Open Golf Scramble, which has raised more than $75,000 for the local ALS Association chapter, and they say the Bucket Challenge donations have been overwhelming. (FOX19)
CINCINNATI (FOX19) -

The ‘Ice Bucket Challenge' is flooding social media to raise awareness and funding for Amytrophic Lateral Sclerosis and the chilling challenge is warming the heart of one local woman battling the disease.

Shirley Schmelzle was diagnosed with ALS, also known as Lou Gehrig's Disease, five years ago. She is taking life one step at a time, and one day at a time, and right by her side is her husband Ed.

"It's difficult to get up every day and know that you're still progressing through this disease," said Ed Schmelzle.

Shirley says it took her nine months to be able to talk about the disease after her diagnosis in 2009. ALS currently has no cure and statistics show the average survival time is three to five years.

Symptoms for someone with ALS vary, but Ed says the first thing to go for Shirley was the ability to speak, as the muscles in her jaw began to fail. Just recently Shirley resorted to a feeding tube.

Patients begin to lose strength in the arms, legs, and hands. Ed says the mind stays sharp, but the body isn't able to catch up.

"You live it 24 hours … you basically watch the progression take place and try to brace yourself for the end because there's no hope at this point in time," said Ed.

Stats don't mean anything to Shirley and Ed because today she can still walk, write, and relay her emotions. Shirley uses a tablet to communicate and offers a special shout out for two men who have led technological advancements she relies on.

"God bless Bill Gates and Steve Jobs. We're just thankful we're in that age of technology," said Ed Schmelzle.

Ed says at first they had no idea how to handle the diagnosis. But over the years they've learned to channel any feelings of "why us" into a personal mission to help others.

[Read: Shirley Schmelzle's Bio with ALS Association, Central Southern Ohio Chapter]

In 2011, they created the Sunflower Open Golf Scramble, which has raised more than $75,000 for the local ALS Association chapter.

The ALS Ice Bucket Challenge has been instrumental in raising more than $53 million for the Association in just the last three weeks. The group reportedly raised just $2.2 million in the same period one year ago.

"Nothing has ever brought awareness as much as it has just in the past few months so it's overwhelming," said Ed Schmelzle. The video stunt started as a grassroots movement in Florida and developed into a social media campaign that has reached celebrities, politicians and Facebookers worldwide.

"How do we now take the funds that are being raised and the awareness and build that into what it's going to take to sustain the effort and to drive the research," said Ed Schmelzle of the money that's been raised.

Just a year ago Shirley was climbing stairs, golfing, and gardening. For now, that part of her life is over. But now it's about making the best of every day and being close to the ones she loves, including their first grandchild.

"We didn't know Shirley was going to be around for that so the wish now is to stick around to watch him grow up," said Ed Schmelzle.

Shirley is preparing to start gaze technology that allows her to communicate with her eyes.

If you want to donate to the local ALS Association chapter visit http://webcsoh.alsa.org/.

Related content: ALS victim makes eloquent case for Ice Bucket Challenge

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