Huntsville family shares Alzheimer’s journey, road to diagnosis
HUNTSVILLE, Ala. (WAFF) - Huntsville native Peter Black was diagnosed with Alzheimer’s disease when he was just 55-years-old. He was working as an electrical engineer at the time and had no plans to stop. But, after years of searching for answers, he got a diagnosis that changed everything.
“They say it takes a village to raise a child,” said Susan Black. “It takes a village to help support somebody who is undergoing Alzheimer’s because it’s a long process, and they call it the longest goodbye for a reason.”
Susan and Peter never imagined a disease like Alzheimer’s would take their freedom at such a young age. They had full-time jobs, traveled on the weekends, and looked forward to retirement.
“The very first sign that I noticed that something wasn’t quite right with Pete was in 2010,” Susan said. “It was two weeks before his 50th birthday. We all repeat ourselves, and we don’t remember if we told you a story or somebody else. But this was different. He told me a story, then immediately told one of our friend’s the same story and then came back and told me the story as if it had never been told. So I knew that wasn’t right.”
Peter’s behaviors and habits were changing. Susan said her mother and grandmother had Alzheimer’s, so she was familiar with some of the signs and symptoms. However, getting a diagnosis was not easy.
“We needed a diagnosis because we needed to know what the next steps were,” she said.
Susan, a pediatric neurology nurse, took her husband to many doctors, but no one would give them a solid answer. She knew Peter would need a PET scan to get a definitive answer. Unfortunately, most PET scans to determine Alzheimer’s disease are not covered by insurance so Peter had to take part in a clinical trial.
“It took five years to get the diagnosis, and that’s because I was very persistent and I did not give up, and I even challenged some of the doctors,” Susan said.
According to Dr. Linnea Pepper, a geriatrician at Huntsville Hospital and assistant professor of medicine at UAB, Alzheimer’s disease is most common in adults over the age of 65. But, it doesn’t discriminate.
“It’s a disease of aging but it can affect younger people, most commonly when there is a family history or a genetic predisposition,” Pepper said.
Peter, a healthy middle-aged man, was officially diagnosed at age 55.
“I’m not going to be like I was before,” he said. “But with her, maybe I can go a little further.”
Susan said getting an early diagnosis was critical. She hopes she inspires others to take control of their health.
“I’m persistent not only for Pete but for myself, and I’m not going to take no for an answer,” Susan said. “When I feel as though something is not right, I am going to pursue it. So somewhere down the line, even if I didn’t get an answer here in Alabama, I would have gone elsewhere.”
Peter retired one-year after his diagnosis. Susan later retired.
“There is fulfillment in your work and your coworkers become your family,” she said. “But I could see that Pete was having a little more difficulty, and I just needed to be at home.”
Susan and Peter had to make changes to their daily routine, big and small. They had hoped that during retirement they could visit all 50 states, and spend time with extended family. But, the Huntsville couple now lead very simple lives.
“Live each day. If a trip comes up, an opportunity…go…go on that trip,” Susan said. “Don’t put it off for retirement because your retirement may not be what you think it’s going to be.”
Although life didn’t play out as planned, Susan and Peter strive to enjoy each day in their calm, beautiful Huntsville home. They now have two dogs, Bella and Gracie. Susan said their dogs love Peter and are always by his side.
Peter has taken part in some clinical trials, including one at HudsonAlpha in Huntsville. Susan said she is fond of their Memory and Mobility Program.
“Maybe we can’t find a cure for him, but hopefully we can find a cure for the next generation,” she said.
There are several Alzheimer’s support groups in the Huntsville-Madison area. Susan said she goes to one at Latham Methodist Church. You can find a list on the Alzheimer’s Association website.
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