It’s only recently that the stigma attached to dementia has lessened. For a long time, Chuck’s relatives didn’t talk much about their family history. But since his diagnosis in 2004, Chuck has talked with support groups, participated in research and testified before Congress.
His cousin Gary Reiswig, who now knows he does not carry the PS2 gene variation, has gone even more public about the disease that has ravaged his family. His new book, The Thousand Mile Stare: One Family's Journey through the Science and Struggle of Alzheimer's, is a very personal journey through generations of disease and tragedy.
The book opens in 1936, when Gary and Chuck’s grandfather, perhaps in the early stages of Alzheimer’s, drove his truck into the path of an oncoming train in rural Oklahoma. He and one of his sons were injured, and his wife was killed. From that story, so emblematic of the family’s problems, the book spans two continents and more than two hundred years. The family’s roots as “Volga Germans” who left Germany to farm land along the Volga River in Russia in the 1700s are interesting, but it’s the little details of daily life with Alzheimer’s that make this book so riveting.
Shattered and Scattered by Disease
Reading the book, I was struck at how hard life would have been for the Reiswigs even without Alzheimer’s. Life on the farm wasn’t easy, and they had to deal with wars, the Great Depression and the Dust Bowl. Did enduring these hardships, especially the Dust Bowl, shape how the family has dealt with Alzheimer’s?
“But in that same generation, people lived long enough for the disease to rear its ugly head,” he says. “The symptoms became apparent in Dad and three of his siblings almost simultaneously. The neighbors began to realize that the Reiswigs were ‘a little crazy.’ To develop this kind of reputation in a community where they were trying to fit in was devastating, and really led to the way my family has scattered. When I was a kid, most of my family lived within a few miles of each other. But now I have only one relative there, and she is basically comatose in a nursing home. So the Dust Bowl, depression and wars were bad, but the events after the late 1930s, when my granddad drove his truck through the railroad crossing and my grandmother was killed, were much more ominous.”
Along with many family members, Gary gave blood samples for research in the 1980s. But it was only when he saw a diagram of the family tree published in a scientific journal in 1995 that he understood he did not have the PS2 gene. His father, brother and sister and many of his cousins have now died of Alzheimer’s, and he describes himself as “the last man standing.” He says it took some time to find meaning amidst all this sickness and death.
“After my father died and the reality hit me that I was possibly next in line, I became imbued with some sense that life had speeded up,” he says. “I felt I needed to try to do EVERYTHING in anticipation that my life could be cut short. In retrospect, I think that was probably an overreaction. A more appropriate reaction might have been to try to stay in the moment, to concentrate and to not try to do so many things. I regret that I let myself be spurred into trying to do so many things, not gaining the expertise I really wanted in areas like writing. In essence, the disease has finally given me a direction and purpose for the rest of my life: writing about the disease, and helping my family and others who are facing the same quandary I was facing.”
A Long Haul to the Cure
Along with each generation’s stories, Gary writes about Alzheimer’s research, from Alois Alzheimer’s description of the plaques and tangles in the brain of a young onset dementia patient in the early 1900s to the immunotherapy and imaging studies Chuck is participating in. Sorting through the research has made Gary more realistic about progress towards a cure.
“Every day you see some article about Alzheimer’s research, and it sounds so good,” he says. “But it’s one little piece, one little aspect. What I learned talking with researchers is that we’re still looking at a long haul.”
If you’re interested in Alzheimer’s research, or simply want to know more about this extraordinary family, I recommend The Thousand Mile Stare.