Arthur Cohen may have lost his voice because of amyotrophic lateral sclerosis (ALS), but he hasn't lost his sense of humor. “It's not all bad,” he writes over email, referencing his diagnosis. “I get preferential treatment at the DMV,” he jokes. “And I got to meet Snoop Dogg!” Sure enough, Arthur forwards a picture of himself and the rapper posing during a radio show in Manhattan, a visit arranged by his home caregiver. “My life isn't over,” Arthur writes. “It's just different.”
A NEW PURPOSE Arthur...Image Tools
Life is undoubtedly different for Arthur. Three years ago, the then-57-year-old was a professional photographer in Maplewood, NJ, where he lived with his wife, Janet, and their two college-aged kids. Today he's in a wheelchair and has a full-time caregiver. His photography business has been replaced by a nonprofit organization that funds research and treatment programs for people with ALS, a progressive neuromuscular condition that affects as many as 30,000 Americans, typically between 30 and 70 years of age, and results in loss of speech, muscle movement, the ability to swallow, and eventually death.
Life began to change in May 2013, when Arthur started slurring his words. “When talking to me on the phone while I was at work, Janet asked if I'd been drinking,” he says. Janet, who had nursed an uncle with ALS, grew concerned when she started noticing similar symptoms in her husband, including muscle spasms, extreme fatigue, and falling spells. With her encouragement, Arthur found a neurologist who administered a battery of tests, including an electromyography (EMG), which tests the health of muscles and nerves and is useful for confirming a diagnosis of ALS. Just before Thanksgiving of 2013, the Cohens got the news they dreaded. “The doctor called us and said, ‘Your test was not normal.’ We both instantly knew what that meant,” Janet says.
The next few months were a horrible period of grief for Arthur and his family as he lost the ability to complete simple tasks like buttoning his shirt and zipping his pants. But as spring approached, Arthur started eyeing the Kirby cucumbers that grew in his backyard and made a plan.
FROM PICKLES TO PICKALS
Together with a group of trusted friends they dubbed “the Brine Trust,” Arthur and Janet began harvesting and canning the cucumbers from their garden, turning their kitchen into a full-time factory for producing pickles—or “pickALS,” as the Brine Trust took to calling them.
On a given weekend, the Cohens and the Brine Trust would produce about 120 jars of pickles, then deliver them to local ALS walks and organizations. They were an instant hit. “Arthur doesn't do a hot brine where the cucumbers get soft and mushy,” Janet says. “He uses a cold brine formula, and the pickles end up really crunchy and fresh. People say they're the best they've ever had.”
That and the cause they support is why business is booming. Not only have the Cohens and their team raised more than $100,000 for ALS charities, but they've also moved production to a manufacturing plant in New Jersey to keep up with demand. They hope to find a distribution network to sell their pickles in grocery stores.
“I'd be lying if I said I didn't have down days, but pickALS keeps me positive,” Arthur writes. “Every time an order comes in, I smile.”
And he and Janet are at peace with whatever comes next. “The future is not what we had planned,” says Janet, “but we want to make the most out of the time we have.”