The Thousand Mile Stare: A Conversation with Gary Reiswig

My friend Chuck Jackson was diagnosed with young onset Alzheimer’s disease at age 50.  It wasn’t a total surprise to him – his brother was being treated for Alzheimer’s and many of his cousins had it.  His mother and at least nine of her siblings had it.  Most had symptoms early in midlife; some died while still in their 50s.  Chuck and many of his relatives have a rare genetic variation called presenilin 2, or PS2, that almost guarantees a person will develop Alzheimer’s.

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?

Gary Reiswig

“I think the Dust Bowl was the least of it,” Gary says.  “Going back to when my family left Germany and went to Russia, they spent 110 years living in a small German enclave surrounded by people they were suspicious of and who were suspicious of them.  So they had this cultural legacy – a sense of isolation.  Then when they came to the U.S., they were exposed to a broader community and tried to adjust to their new situation.  They even gave up their religion and became Seventh-day Adventists.  They adopted this new religion full force and were prominent in the church for a generation or two.  In my dad’s generation, with World War I and World War II, they stopped speaking German at home.  They really tried to fit in.”

“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.”

Finding Meaning

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.

Comments

[Kathryn]

The Thousand Mile Stare is indeed a riviting story. I read it in one day (2 sittings). I'd heard of EOA, but am more familiar with the more common late-onset Alzheimer's, having recently lost an uncle to dementia. I made many many visits to the 'Memory Care' facility and watched residents come and go over the 4 years he lived there.
Tears flowed as I read passages of the book; others brought smiles. My dad grew up in Oklahoma. He recounts stories of the Dust Bowl and Depression eras, so that part story was also familiar.
Luckily, we've only had one case of dementia in my family, so far...
I thank Gary's family for their willingness to be tested and their involvment in searching for the cause and hopefully soon, a cure for Alzheimer's. Thank you for writing a couragous and enlightening book.

[MARY E VARNER]

HI GARY,I AM YOUR COUSIN MARY ELLEN REISWIG VARNER, I AM EZRA'S YOUNGEST DAUGHTER. MY HUSBAND ROGER AND I WENT BALKO LAST WEEK TO CHECK ON MOM AND DAD'S GRAVE. WE HAD NOT BEEN BACK SINCE MOM DIED IN 1998. IT WAS A FAST AND FURIOS TRIP. WHEN WE GOT HOME I STARTED GETTING ON THE INTERNET CHECKING OUR FAMILY AND UP POPPED YOUR NAME AND FOUND OUT YOU WROTE A BOOK ABOUT OUR FAMILY. I READ THE BOOK AND IT LEFT ME IN TEARS.THE DEVASTATION THIS DISEASE HAS CAUSED IS ALMOST UNBELEIVABLE BUT YET IT IS STILL HAPPENIN. I DO NOT REMEMBER YOU AND EMBARRASED TO SAY I CAN NOT REMEMBER YOUR PARENTS NAMES

[Gary Reiswig]

Mary Ellen, thank you for writing. My parents were Fred & Della (Gregory) and I remember you and Vicki very well. Your mom and dad, with the two of you, often stayed with us when you came to Oklahoma to visit when you were small and I carried you around the house when you were a baby. If you want to contact me directly, my email address is gdreiswig@yahoo.com. I hope to hear from you.