One Life to Live

“I don’t know,” Corey said.

That summer, back in California, the changes were even more noticeable. He would drop things, fall when walking. He wasn’t in pain, but his muscles began to twitch violently.

He went to his primary-care physician, who recommended he go to a neurologist.

“In the very beginning, I thought it could have been MS, and thought, ‘that’s horrible,’” his mother Wendy says of multiple sclerosis. A week later, that seemed like an optimistic thought.

There is no diagnostic test for ALS. It’s a diagnosis of exclusion. So doctors ruled out multiple sclerosis, cystic fibrosis, Guillain-Barre syndrome, and HIV.

The neurologist thought it was ALS, but wanted Corey to get it checked at the California Pacific Medical Center’s special ALS research and treatment center. There they did a few quick tests and watched Corey walk down the hall. Then they confirmed that it was indeed ALS.

“We were in shock,” Ted, Corey’s father, says. “We were ignorant, and probably [that] was good. We were somewhat in denial, not sure where the disease was going.”

They also told Corey something that has stuck with him since. There was no known cause for his case. They said there was no point in dwelling on what could have caused this.

It was a very quiet dinner that night at the Reich household.

 

Corey’s symptoms progressed relatively slowly, though there was no way to predict the speed of the course of the disease. His lung capacity—an important indicator for the progression of ALS—was still at 98 percent. And so, his friends flew out to California and they drove together, across the country, back to Middlebury for their senior year.

One day, back on campus, Corey got out of his car in a handicap spot. He didn’t need a cane at that point and, though he couldn’t run, he could still walk. Another student began to give him a hard time about parking there, until Corey explained.

“At that time, if you really knew me really well, it was noticeable that something was wrong, but if you were a casual passerby, you wouldn’t notice that I had this horrible disease,” he says. “So that was the weird part, sitting there, thinking who knew and who didn’t. But anyone who did know did anything they could to help out. ”

The ice on the ground during Vermont’s winters didn’t make things easy for him. Sometimes he fell. He wore shoes with metal clamps on the soles for traction, and the College’s Americans with Disabilities Act Office arranged to have the sidewalks on his routes to class shoveled early whenever it snowed. He also had trouble with his handwriting, so his professors let him take exams home to type them up.

“I told my teachers about it, so I got a lot of sympathy,” he says, smiles, and then adds a bit of a serious thought. “That was the reason you went to Middlebury in the first place, because it’s so small, and you do have amazing connections with the professors.”

Graduation came in 2008, and Corey, like his classmates, stayed up the entire night beforehand. He had an amazing time, singing songs and watching the sunrise from the football field.

And, during the commencement ceremonies, he made his way up the ramp when it was his turn, holding onto the handrail “for dear life,” he recalls. He was terrified that he would fall down in front of everyone. He didn’t.

 

Corey has no problem talking about the disease, and his warmth and attitude make him a natural for engaging others on the topic. The fact that he can still talk and move—although he now needs help getting dressed—means, in some twisted way, he has been lucky so far. If you can call it luck. There’s no indication about why his progression has been slower so far, though some speculate that ALS occasionally moves more slowly in some younger men. (“We thought he’d be in a wheelchair within a year,” Wendy notes.)

The lack of development in treatments for ALS is beyond frustrating for patients and their families. Part of the problem with making any progress, Ted believes, is that since the population living with ALS seems small, financial incentives haven’t driven drug development for ALS as for other diseases. But if the life expectancy can just be lengthened, Ted believes, with more people living with the disease, there will be more interest.

Shortly after Corey was diagnosed, the family learned about an organization called ALS Therapy Development Institute (ALS TDI). It’s a research laboratory dedicated to discovering and developing treatments to hopefully slow and eventually stop ALS.

Corey has become a major spokesperson for the institute, raising nearly $2 million for ALS TDI, speaking at conferences, and promoting the Young Faces of ALS Campaign to show that this isn’t just an older person’s disease.

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