A Middle Georgia ALS challenge

Two years ago, the ice bucket challenge was all the rage. You couldn’t turn on the news or check Facebook without seeing somebody somewhere get a bucket of ice dumped on his head.

I remember the challenge and the videos of the ice being dumped over the heads of my friends or celebrities. But the point, or the purpose, escaped my memory until I talked with Chris Marcella, of Perry, the other day.

Back in 2009, Chris was getting ready for a half marathon. Out for a run one day, his leg started “spazzing” out. He was originally treated for a pinched nerve but when his symptoms didn’t get better, he saw a variety of doctors, narrowing down the possible causes.

Then came the day in March 2012 at Emory.

“The doctor told me I had ALS,” said Chris. “It came out of the blue. I couldn’t even spell ALS until that day.”

Amyotrophic lateral sclerosis, which is also known as Lou Gehrig’s disease, causes the death of neurons that control voluntary muscles. Over time, mobility, speaking, swallowing and breathing are all impacted as the disease worsens.

There is no cure. ALS is a death sentence and most patients are given 2-5 years to live. About 10 percent of those diagnosed with ALS will live beyond ten years — Stephen Hawking was diagnosed in 1963.

Almost five years since his diagnosis, Chris has about 50 percent strength in his right arm and leg and his breathing is down to 60 percent.

“The doctor told me to go live it up,” Chris said. The Marcella family has taken a trip to Israel and Chris has been skydiving.

“I know I am beating the odds. I can still walk — I look a little drunk because my balance is off. My right arm and leg are weak but I am still able to walk,” said Chris.

But what Chris really wants to do is bring awareness to ALS and put a face to the disease. For those not familiar with ALS, he suggested a docudrama currently on Netflix and Amazon Prime about Steve Gleason, the former New Orleans Saints player who has ALS.

According to Chris, about 30,000 people a year are diagnosed in the United States with ALS. More funds are needed for research to find treatments and a cure.

“It is a horrible disease that leaves you powerless,” said Chris. “The people around you are powerless except to take care of your basic needs.”

Chris belongs to an ALS association support group that meets on the third Saturday of every month at 10 a.m. at the Rehabilitation Hospital, Navicent Health, in Macon.

The group has talked about doing a fundraiser to benefit the local chapter, especially some kind of walkathon. The problem is that those that are fighting ALS are tired a lot, from the disease and from fighting it. Those that care for them are worn out from care giving.

So I am issuing my own challenge. The most caring, compassionate people live here in the Middle Georgia area. I know that there is some organization out there, some group of high school students, somebody, who will organize a walk for our local ALS support group. If this is something you feel led to do, get in touch with me and I will get you in touch with Chris and the ALS support group.

A walk for ALS in Middle Georgia.

Maybe it will raise money, maybe it will raise awareness.

Or maybe it will just raise the hope and strength of those in our community that are living with this dreadful disease.

This story was originally published January 7, 2017 at 3:01 PM with the headline "A Middle Georgia ALS challenge."