Amid Ice Bucket Challenges is the Real Challenge for Families Battling ALS

Updated: 08/22/2014 1:59 AM
Created: 08/21/2014 11:05 PM
By: Jenna Lohse

(ABC 6 News) -- Dumping cold water over your head to raise millions of dollars for ALS research seems to be all the rage in recent weeks, but sometimes we forget why we're doing things. What is ALS and how does it feel to live through it every day?

Ernie Faulkner never would have dreamed to be taking care of his bed-ridden wife at just 63 years old.

"It got progressively worse each day,” said Ernie Faulkner, caregiver for his wife. He says there's no way he's leaving her side after eight years of marriage. "I signed up for the full thing, I was all in and it's easy to go through the good times, but you better take on the hard times,” he said.

His wife Linda was diagnosed with ALS in 2011. They traveled from South Carolina to Mayo Clinic, but Linda is now in hospice care, with little time left. "It can't be long I don't see, unless there's a miracle of biblical proportions,” said Faulkner.

What started with Linda’s left leg not working, “She has now lost the use of her legs and arms and hands,” he said.

"This disease is devastating, for individuals many of the people who it's affected are in the prime of their lives,” said Dr. Eric Sorensen, Medical Director of Mayo's ALS Center. "It affects all the muscles of the body causing people to eventually die of respiratory failure and on average that takes about two years from the time the diagnosis is made,” He said. Around 5,000 are diagnosed each year and there's no effective treatment, just one drug that can slow the disease down by a matter of months.

Which is why raising money for research is vital. The ice bucket challenge phenomenon is making strides for those living with the reality of this deadly disease.

"Watching the power of a viral video is unbelievable,” said Sorensen.

"The money has to come from somewhere and it thrilled my heart to hear about this,” said Faulkner.

Although future research may not help Ernie Faulkner’s wife Linda, he wishes no one else will ever have to see their loved one struggle like this. "You just value each day, you're just ever so thankful for each day you have,” he said.

So far, The ALS Association has raised more than $40 million in just this past month.
For more information on how to donate click here.