The slurred speech was Steve Krohn’s first sign that something was wrong. He would get up in the morning to set his daily voice-mail greeting, and it would take five or six tries for him to leave an intelligible message.
When it started two years ago, Krohn, 50, went to a doctor, who ruled out brain tumors or a stroke, multiple sclerosis or muscular dystrophy. The severe fatigue, swallowing problems and weak left arm came later.
On April 15, he got his diagnosis. He has Amyotrophic Lateral Sclerosis (ALS), known as Lou Gehrig’s Disease.
ALS is a fatal neurodegenerative disease that attacks motor neurons and causes deterioration throughout the brain and spinal cord. Only one in five people diagnosed with ALS live longer than five years after the onset of symptoms. There is no cure for the disease.
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“Before my diagnosis, I had never heard much about it,” Krohn said. “Having done a little research and working with the medical team, I’ve become aware of how devastating this disease is.”
Shortly before Krohn’s diagnosis, a group of his co-workers at KPMG, an audit, tax and advisory firm, were organizing a team to run in this weekend’s Ragnar Relay Northwest Passage, a 200-mile race that involves 12 team members, three volunteers and two van drivers. Only one team member runs at a time, with each person completing three different legs of the race.
The team started the race Friday in Blaine and will reach the finish line in Whidbey Island on Saturday afternoon.
When Krohn retired from KPMG in Seattle after 26 years with the firm, the team decided to raise money for ALS research and run the race in honor of Krohn, said Michaelle Hoffman, an audit associate at KPMG and team organizer. The team has raised $100,000 in pledges for the Evergreen Chapter of the ALS Association.
“We are feeling so blessed that we can help the community and help Steve in this way,” Hoffman said. “It’s been an incredible experience.”
Krohn said he was hesitant when team member and former colleague Dan DeYoung first asked if they could dedicate the race to him. He’s a private person and hadn’t told a lot of people about his diagnosis. He agreed after realizing the team could create public awareness.
“It’s proven to be a mechanism for how we have been able to talk more broadly about it and understanding and accepting where we are with this,” Krohn said. “It has been very therapeutic.”
The team went on practice runs to train and kept in contact with Krohn, who said he hopes to live past three years. The typical life span for someone with his form of ALS is two years after the onset of symptoms. He’s already reached that mark.
“Rumors of my divine demise are overstated,” he said with a laugh. “I just have to deal with symptoms as they progress.”
He’s not sure what his energy level will be or how long he will be able to stand and speak, but he knows one thing: when the runners reach the end of their race, he’ll be at the finish line.
Paige Cornwell: 206-464-2517 or email@example.com