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.