ALS: The reality of a deadly diagnosis

Posted at 8:59 PM, Aug 19, 2014
and last updated 2014-08-19 21:16:33-04

WEST MICHIGAN. --The Ice Bucket Challenge has raised millions of dollars to fight ALS, but many are still unaware of the daily struggles of those living with the disease.

ALS is a fatal, progressive neuromuscular disease, and research shows every day there are 15 new cases across the nation. There is no cure for ALS and no known cause, and ALS can change the lives of victims and their families in an instant.

For two West Michigan families, their Ice Bucket Challenge means more. Kathy Feyer and Pam Van Vliet know firsthand the struggles and the devastation that can come with ALS.

Feyer's mother, Penny, died at age 75 from ALS after being diagnosed just 14 months earlier. “She was a very energetic fun loving person, loved her kids and grandkids," she said. "When she was diagnosed, she never complained.”

The syptoms began for Feyer's mother when she began having trouble swallowing. ALS attacked her lungs and ability to breathe.

Van Vliet lost her husband at the age of 64, just nine months after being diagnosed. “He was a wonderful father and grandfather and husband," Van Vliet said. "He was always so giving of himself and his time and what he did for others."

Just months after his diagnosis, Van Vliet was was completely paralyzed. He had to drive his wheelchair with his chin.

"The unfortunate part -- other than everything -- is that (ALS) does nothing to your mind, you know everything that’s going on," said Pam. "His body betrayed him."

For Pam and Kathy, they didn’t know much about ALS until they lived through the struggles, and now with more than $20 million donated since the Ice Bucket Challenge, they have a sense of hope that the disease that has already taken so many lives will one day be beaten.

“A lot of people don’t know what the disease is, but what they’re doing is a wonderful thing, and they are helping a lot of people,” Feyer said.

In West Michigan, the Haunenstein Neuroscience Center at St. Mary’s Health Care is the only certified ALS clinic in the area.

Tuesday, some of the staff took part in the Ice Bucket Challenge and sent out a challenge to the community to raise $10,000 for the center.