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“I hate to tell you, but you have early stage Alzheimer’s.”
When Gary Shelton, 58, heard those words from his neurologist, he didn’t react as most might expect. He did not deny his memory problems or rage against his condition or fall into a state of hopelessness. For Gary Shelton, hearing he had Alzheimer’s brought clarity and, eventually, a strong sense of purpose.
Prior to his diagnosis, Shelton couldn’t understand why, after more than two decades as a successful salesman, he was fired from several jobs, one right after the other. “Evidently,” he said, “I was doing something wrong, and I didn’t know what.”
What Gary didn’t know was that he was suffering from early-onset Alzheimer’s. According to the Alzheimer’s Association, more than 5 million people in the United States are living with the disease. About half, 2.5 million, are in the early stages.
And the number of early-onset Alzheimer’s cases is growing, according to Bill Thies, chief medical and scientific officer for the Alzheimer’s Association in Chicago, Illinois. “Not because there is more of it, but rather because it is being recognized more commonly.”
Early onset is defined as Alzheimer’s starting before age 65. “Typically it is not recognized as Alzheimer’s disease because 48-year-old people are not supposed to get Alzheimer’s disease, so they will often be misdiagnosed as depressed or burned-out, for example, to explain their job difficulties,” Thies said.
Gary is a typical example. He lost jobs, but because his symptoms weren’t severe enough to significantly interfere with his daily life, they went unnoticed — until Gary, who was divorced and living alone, married Diane.
After three years of living together, Diane noticed Gary was having memory problems and encouraged him to talk to his doctor. Gary didn’t think there was anything wrong and allowed a year to pass before he said anything to his physician.
The doctor ordered a simple memory test. The results led to an MRI of his brain, after which Gary was immediately put on medication. Six months later, he was diagnosed with Alzheimer’s.
Diane was not surprised. “I more or less felt like we were headed in that direction. His father had had some dementia problems. I was noticing different things…so I wasn’t too shocked. I was more relieved that I finally did get that confirmation.”
The Sheltons refused to passively wait for Gary’s decline and decided to take charge of their situation. They immediately found resources and support groups in their community of Spartanburg, South Carolina. For Diane, the support groups at the Alzheimer’s Association gave her access to information on caregiving, legal issues, personal finances, managing health care costs, and the invaluable wisdom of those already caring for someone with the disease.
For Gary, settling into a support group was more difficult. Not long after he started going to meetings, he dropped out. “I did because I had other members, early-stage members, look at me and say, ‘You don’t have Alzheimer’s. I mean, you talk.’”
It bothered Gary that other group members, who were suffering more severe symptoms, felt he didn’t fit their profile. But not long after leaving the group program, Shelton realized its importance to him and returned. He decided, “I have the right to be there as much as they do — and so I started going back.”
Gary, now 65, is not only comfortable in his support group, he is doing what he can to encourage open dialogue about Alzheimer’s in the broader community. He is using his experience with the disease to help build awareness about Alzheimer’s and encourage all sorts of people, even doctors, to learn more about early diagnosis and treatment options. According to a 2009 report from the Alzheimer’s Association, studies have consistently shown that the lives of both patients and caregivers can be significantly improved with active medical management of the disease.
Diane has seen how important Gary’s work as an activist and spokesperson has been for his well being. “I think Gary’s work with the Alzheimer’s Association has been the best thing that he could do. He needs to feel like all of us need to feel. We need to feel needed and we need to feel like we’re contributing something. He’s grown.”
The Sheltons have had good results in the management of Gary’s medical condition. Still, they suffer the ongoing personal and financial frustrations and fears that come with Alzheimer’s.
Gary is realistic about his situation. “The medication that you take will only slow the disease down to give you a few more years of comfortable life, but eventually, the disease is going to get to where the medication does not help it.”
The couple knows that the future will most likely bring increasing difficulties, but they have made an active commitment to staying positive and take life one step at a time. Diane manages a smile and sums up their approach. “You know, we don’t try to dwell on it or anything like that. We just react and do what we have to do.”