COLUMBIA, SC (WIS) - Governor McMaster is declaring May, ALS Awareness month in South Carolina. It is a step those who advocate for awareness hope will put more eyes on the progressive disease that destroys nerve cells in the brain.
If you heard about the "Ice Bucket Challenge" you'll remember many, including you, might have learned about ALS during that time. Some Midlands residents like Air Force veteran Clifford and his wife, Darlene Orr are hoping that ALS is known for more than a popular challenge.
The couple says they've been working to raise awareness about ALS since Clifford was diagnosed in 2011. Clifford Orr has made it to 70. He lives a life now, of trying to explain ALS.
Over time, his muscles have become weaker. Everyday tasks, like opening drawers, are always a challenge. We say muscles, because Clifford's spirit and best friend Darlene Orr, have grown strong.
Their mission to find a cure, and help doctors diagnose the disease, is time sensitive. Darlene says it took two and a half years before Clifford was diagnosed with ALS.
"We're blessed that Cliff's ALS, my understanding now, is slow moving and truly we are blessed. But we've met people that were diagnosed and within a year they're gone," Darlene said.
The ALS Association-South Carolina chapter says on average those with ALS have 24 to 36 months to live. The Orrs took to Washington D.C. recently, to meet with state lawmakers and their staff. Inch by inch, the Orrs say they will continue to work.
"I wanted to do what I can. I'm not a great speaker or nothing like that, but my wife she loves to talk and she's my mouthpiece when I get weak and can't talk she's always there," said Clifford Orr.
"We need to find a cure for ALS, but if we can't find a cure in our lifetime, at least find a way that our doctors can diagnose more quickly, because the quicker you're diagnosed and start on certain medications and start eating right and having a spiritual outlook, I think life is extended longer that way," Darlene.
The ALS Association-South Carolina Chapter says veterans are two times more likely to develop ALS, but no one is certain why. They also say, the challenge with a diagnosis, comes in the form of a trial and elimination system that could be improved with more funding and research.
About 300 people in South Carolina are living with ALS. As many as 30 thousand Americans have the disease, according to the ALS Association-South Carolina Chapter.
There are several fundraisers this year for the ALS Association in South Carolina to raise funds toward research. That includes the Midlands Walk to Defeat ALS, on Sept. 22, Upstate Walk to Defeat ALS on Oct.13, and the Lowcountry Walk to Defeat ALS on Nov. 10.