Facing a Genetic Legacy of Alzheimer’s
New medical memoir chronicles one family’s role in the
discovery of a genetic marker for early onset Alzheimer’s
disease.
Today, with a drop of blood, science can tell each of us whether
we will get early onset Alzheimer’s disease (EOAD). This
medical leap forward is due in large part to one family, the
Reiswigs, who had the courage to reverse generations of denial
and share their medical history with doctors, researchers, and
policymakers on Capitol Hill.
In The Thousand Mile Stare: One Family’s Journey
through the Struggle and Science of Alzheimer’s (Nicholas
Brealey Publishing, 2010, $22), GARY REISWIG traces the strange
and troubling history of his family, starting with his Volga
German ancestors of the early 1900s, around the time when Dr.
Alois Alzheimer first put a name to the disease that would afflict
generations of his relatives to come.
Says Reiswig, “For many years, we had kept information
about forgetful grandparents, dotty parents, loopy aunts, and
childish uncles to ourselves. After our blood was drawn, strangers
would examine our DNA under a microscope, exposing problems
that had been kept within the family for generations, opening
our family secrets to the outside world.”
As the Reiswigs face their destructive genetic legacy, they
come to play an important role in the discovery of a key genetic
marker for Alzheimer’s. Over the course of the story,
Reiswig family members give valuable testimony to Congress that
influences research and scientific development, and learn to
understand each other and the debilitating disease that both
bonds them together and tears them apart.
Interweaving cutting-edge medical science with a poignant family
chronicle, Reiswig explores themes that include:
• Warning signs of Alzheimer’s disease
• Practical ways to deal with caregiver stress
• When and how to get genetic testing for EOAD
• To conceive or not to conceive: ethical and emotional
issues for those who carry the genetic marker for EOAD
• End-of-life decisions—for AD sufferers and their
caregivers
• New treatments for Alzheimer’s that slow its
progression
• How one family coped with a frightening genetic legacy—and
what we can learn from them
The Thousand Mile Stare takes readers on Reiswig’s
own compelling emotional journey, starting from when he was
first piecing together the puzzle of his family’s inexplicable
behavior, through thoughts of his own planned suicide when he
feared a positive diagnosis, and finally to the development
of a genetic test that would predict EOAD.
Reiswig is relieved to find out that he is among those in his
family, which now includes his two children, who do not carry
the genetic marker for EOAD. He won the genetic coin toss.
Many others among the Reiswigs were not that lucky. Reiswig
saw his grandfather, father, sister, and brother all suffer
and die from the disease. Readers facing a similar genetic ticking
time bomb, as well as those coping with Alzheimer’s in
their family, will gain valuable insights from the struggles
and triumphs of Gary Reiswig and his family.
Praise for The Thousand Mile Stare
"Gary Reiswig tells a family history like no other. Written
with strength and passion, The Thousand Mile Stare confronts
a dread shared by families everywhere."
-Dava Sobel, New York Times bestselling author of Galileo’s
Daughter, Longitude, and The Planets
“A powerfully moving and extraordinary story told with
a courageous heart.”
-Lisa Genova, author of the New York Times bestselling novel
Still Alice
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