Doug Robinson: 'We're going to enjoy our time'

Published: Tuesday, June 10 2014 8:45 p.m. MDT

He sought a second opinion at the University of Utah Medical Center. On Dec. 11, 2012, Daren and Leah received the bad news: He had ALS. As Daren puts it, “Basically, (the doctor) told me: ‘You’ll die. Usually within two to five years. There are no treatments. We’re sorry. Go home and get your life in order. Prepare your family.’ ” Says Leah: “It was devastating. We sat there crying. We wondered what do we tell our kids.”

ALS is a neurodegenerative disease in which the body slowly becomes paralyzed, a piece at a time. The muscles used for speech, breathing and swallowing atrophy. In the end, sometimes all a patient can move is his eyes, and yet the mind remains sharp; it is simply trapped in a decaying shell. Most ALS websites report that every 90 minutes someone is diagnosed with ALS, and every 90 minutes someone dies from ALS. They believe more and more people will contract the disease in the future. Its cause and cure are unknown.

As he sat in a restaurant on a recent afternoon, Daren struggled to catch his breath, his shoulders rising and falling with the effort. Because the diaphragm no longer functions, he pushes his hands downward against his legs to push his shoulders up, which in turn helps inflate the lungs.

“It’s an aggressive disease that can destroy your will to live,” he says.

He can walk only 20 to 30 feet and soon will be confined to a wheelchair. His muscles continue to twitch and cramp. His body never relaxes, so he burns calories rapidly — his weight has slipped to 190 — but eating and swallowing are difficult. He works so hard to breathe that he is chronically tired, and yet he can’t sleep because his lungs collapse when he is lying flat on his back, so he rests in a recumbent position on a stack of pillows, takes a sleeping pill and wears a mask that is attached to a machine that forces moistened air down his throat.

He quit his job in March 2013 to spend time with his family. Three days after the diagnosis, the family went to Disneyland. Usually people are diagnosed with ALS later in life, when they no longer have children at home, but Daren and Leah are still raising their daughters, which makes the disease all the more devastating. They chose to tell the girls about the ALS gradually, a piece at a time.

When Lexi finally learned that her father had ALS, she looked it up online but didn’t get far. “I started to read about it, but then I didn’t want to read anymore,” she says. “I don’t want to know what’s going to happen.”

Says Daren: “We cry all the time. From Day 1. Then, at the same time, we say we’re fighters. We’re going to enjoy our time.”

Doug Robinson's columns run on Tuesdays and Wednesdays. Email: drob@deseretnews.com

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