My Friend Was Struck by ALS. To Fight Back, He Built a Movement – WIRED

Brian Wallach's left hand cramped and he dropped his pen. Ten minutes later, it happened again. Annoying. He'd spent months preparing for this case. He'd joined the US Attorney's Office, a dream job, almost three years earlier. He was in the midst of prosecuting the surviving member of a group that had smuggled guns into Chicago from Indiana. The trial was a few weeks away. And now these cramps. He chalked it up to stress and moved on.

That was April 2017. On July 31, Brian and his wife, Sandra Abrevaya, had their second daughter, jaundiced but otherwise healthy, so all three stayed in the hospital a week. That's when Brian started coughing, barking, unable to finish a sentence. Sandra told him to see a doctor, so he did. He ticked off every symptom he could think of: the cough, the cramp, and also a muscle twitch in his left arm.

That physician sent Brian to a neurologist the next day. The neurologist talked through Brian's symptoms, looked at his tongueit was subtly undulating, something Brian hadn't noticed. The doctor then told him the news: He likely had amyotrophic lateral sclerosis. ALS. Lou Gehrig's disease. If he was right, the doctor said, Brian had approximately six months to live.

That was the same day Sandra and their daughter had come home from the hospital. Brian barely knew what ALS was. It seemed impossible that it would have found him, much less imposed so strict a deadline.

Brian's first call on the drive home was not to Sandra but to Nick Morris, a neurologist at the University of Maryland and a friend from college. Before he could tell Sandra the news, he needed someone to help him process it. Nick obliged, explaining that there's no one definitive test for ALSin fact, a conclusive diagnosis often requires a monthslong process of elimination.

Sandra called in the middle of that conversation, and Brian switched over. She caught something in his voice. No, everything wasn't OK, he told her. No, he couldn't say it over the phone. Yes, he was on his way home.

Sandra paced while the girls napped. When he arrived she ran out to the car and jumped into the passenger seat. Nick was still on speakerphone. I need you to get off the phone because I don't know what's going on, Sandra said to them both. And then Brian told her.

That's not that bad, right?

No, Brian replied. It is.

I'll spare you some suspense. The neurologist was right about ALS, albeit for incomplete reasons, but he was wrong about the timetable. Three years later Brian is still alive.

ALS is a cruel disease. Motor neurons in the brain and spinal cord gradually degrade and then die, robbing the sufferer of control over their muscles. Eventually patients cannot move or speak or eat or breathe. There is no cure and, except in a minority of inherited cases, no known cause. Once symptoms appearin an arm or a leg or a handthe typical survival rate is three to five years. It is fatal in virtually all cases.

Brian was one of roughly 5,000 people in the US to receive an ALS diagnosis in 2017. He's one of more than 16,000 patients living with the disease in the country today. Each has faced some version of Brian's moment in the car: mortality in sharp relief. A loved one at home who doesn't yet know. A decision about how to spend whatever time they have left.

Brian and I have known each other for three decades. Our lives have played out as variations on the same theme: good schools, bad work-life balance, two kids, settled down hundreds of miles from where we grew up. He and Sandra told me this story when I visited them last spring. We were sitting in a bedroom addition of their suburban Chicago home, built with a ramp for the inevitable day that Brian's disease will confine him to a wheelchair.

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My Friend Was Struck by ALS. To Fight Back, He Built a Movement - WIRED