In 2004, James Smith was a 45-year-old IT director who excelled at his job. But on the verge of a promotion to vice president of his division, something alarming started to happen. He says it was like being an air traffic controller who was losing his planes.
“I would have multiple projects going,” he says. “Then, all of the sudden I was losing documents. I was forgetting meetings—even ones that I had called.”
His primary care physician suspected he might be suffering from depression and prescribed medication. Meanwhile, Smith tried to compensate by taking extra-detailed notes. But the symptoms continued to get worse.
“I went to my leadership,” he says. “I said, ‘I think there’s something going on with me, and I don’t know what it is. I’m worried that I’m going to drop a ball and it’s not going to bounce. So can you please plug someone else into this role, because I need to go and figure out what’s going on.’”
Smith’s doctor sent him for MRIs and blood tests. Meanwhile, Smith started to experience physical symptoms such as shaky handwriting and a change in his gait. That led to intensive testing at the University of Minnesota.
He then was referred to a specialist at the Mayo Clinic who told him in late 2005 that he had early-onset Alzheimer’s Disease. The doctor explained that 10 percent of Alzheimer’s patients are younger than 65. He also explained that the disease is always fatal, but the rate of deterioration can vary from about eight to 20 years. With drugs and good nutrition, Smith might hope to be at the longer end of the spectrum.
As Smith and his wife, Juanita, grappled with the news, they decided that there was no point wasting time on anger and frustration. Smith offered himself as a volunteer to the Alzheimer’s Association, saying he wanted to help raise awareness.
“To some degree it’s a selfish thing,” he insists. “If you have an incurable disease, you have a couple of choices. You can go home to die, or you can do what you can do to change it. And if you can’t change it for you, maybe you can change it for the next guy. I’ve never been comfortable saying that this is my lot and I have to accept it.”
Since his diagnosis, Smith has spoken to scores of groups, ranging from health care workers to charitable organizations to corporations. Sometimes it’s to raise money, and sometimes it’s just to build understanding. He has been featured on NBC Nightly News and interviewed on NPR. Last year he and Juanita traveled to Washington, D.C., to lobby lawmakers for increased funding and support for Alzheimer’s research, and they plan to do so again this year. They feel, to say the least, a sense of urgency.
“Until I got this disease, I just didn’t understand the magnitude,” he says. “Five million people have Alzheimer’s, and it’s a hidden problem because most people who get it are diagnosed later and can’t speak out effectively. Why, as a nation, are we not committed to this?”
