Diagnosis: Alzheimer's. Age: 44
06/02/2003 at 01:00 AM EDT
Ron Smith was the kind of Little League coach who knew the names of all his players by the second game of the season. But in the summer of 2001 he found he couldn't match names to faces. "I'd call out, 'Hey, you,' " he says. "I felt really bad. If I couldn't remember their names, how seriously did the kids think I was taking them?" He fared no better at home. A devoted husband and father, he was becoming distant and unreliable. "He'd come in from work and realize the kids weren't there," says his wife, Marcy, 38. "He'd forgotten to pick them up. So he'd get back in the car and drive nine miles to get them at school."
His family doctor blamed Smith's lapses on stress and prescribed an antidepressant. It didn't help. In March 2002 Smith saw a neurologist, who gave him 10 words to memorize. He could recall only three. "I got so frustrated, I started crying," says Smith, a former Marine gunnery sergeant. Days later, when the diagnosis arrived, he was too stunned to cry. Just 44 years old, he was suffering from early-onset Alzheimer's disease, which would likely kill him within a decade. "My doctor said to get our personal effects in order," says Smith. "Marcy and I just sat there." She adds, "I'd thought they would fix what was wrong and we'd go back to our old life. But hearing that, I knew there was no going back."
Like most people, the Smiths believed Alzheimer's struck only the elderly. Yet as many as 400,000 of the 4 million Americans with the disease are 60 (the cutoff for early onset) or younger, and an estimated 20,000 are under 55. Whether it hits early or late, Alzheimer's has the same biological effect: It destroys brain cells that control memory, thought and eventually motor control. But for those stricken in the prime of life—and their loved ones—the toll is uniquely cruel. As one spouse becomes dependent, the other must scramble to pay bills and rear children. Because most victims aren't eligible for Social Security and Medicare benefits until they're 65, retirement accounts and college funds are raided, and families are often forced into debt.
Along with practical hardships comes emotional isolation. In Minnesota, where the Smiths live, the Alzheimer's Association sponsors 200 support groups, but only five are for early-onset cases. "It's hard to be supportive of those who are 70 and 80," says Marcy. "We say, 'Gosh, if we only had 30 or 40 more years.' "
Ron and Marcy thought they would have at least that long when they wed in 1985. The couple—who met in their hometown of Marshall, Minn., when Ron was home on leave—moved around the country after he left the service in 1987 for a series of manufacturing jobs. Six years ago they settled in a four-bedroom home in Annandale, which they share with Dustin, 15, Corey, 12, and Nicki, 7. Smith worked as a safety inspector at a die casting plant, supervising a staff of six. He also coached Little League and taught daycare workers and Boy Scouts how to administer CPR. "He loved to help people," says Marcy.
Now he struggles to help himself. Smith has kept his job but has given up his management duties. He keeps track of daily tasks with the help of a Palm Pilot and a tape recorder, which he uses to give himself verbal reminders—but he sometimes forgets to consult either device. Before he grows too ill to work and loses his health insurance, Marcy, a legal secretary, will have to find employment at a firm that offers benefits. Eventually, they both know, he will need to enter an adult daycare center and finally a nursing home.
Smith has already quit coaching Little League—and socializing. "I feel uncomfortable with people because I don't remember what they said, or I get totally confused," he says. "It scares me." He takes the drug Aricept, which can slow the disease's progress but makes him drowsy. Most nights he turns in by 8:30. Says Marcy: "That's when it hits me that I'm on my own."
Smith fears that he is losing touch with life itself. "I used to cry if a kitten got run over or when the national anthem was played. Now I don't feel happy. I don't feel sad. I don't know what I feel." But on occasion, the numbness shatters. Recently he grew so distraught when Dustin and Nicki had a spat that he left the room, curled up and wept. Later, he told Dustin, "You can't argue with your sister like that anymore—you'll be the one walking her down the aisle at her wedding." The kids try to buck him up. "Don't worry, Dad," Dustin told him. "I can help out more next year. I'll be driving."
"What's hard," says Marcy, "is that he still looks like the same Ron." And sometimes still acts like him. In 2000 Smith took a clown course and adopted the alter ego Snuffles, who visits sick children in area hospitals. Now Marcy and the kids have made it a family affair, donning costumes and joining Snuffles on his monthly jaunts. "I'm a totally different person when I'm in costume," Ron says. "I can't be depressed. My job is to help others have fun, so I have fun too."
Joanne Fowler in Annandale