Granny’s giggle gone too soon

For ddn Chief Editor Amy Swinderman, writing story about efforts to prevent Alzheimer’s disease hits close to home

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Betty Jean Ruth was what you'd affectionately call "acharacter." Born and raised in a family of seven children in Tennessee, shemarried young and settled down with her Army soldier husband in NewPhiladelphia, Ohio. The couple raised six children in the idyllic small town,where Betty was active in booster and card-playing clubs. Those six childrenwent on to bless Betty and her husband Floyd with six grandchildren.
Betty Ruth sounds like your average Midwestern housewife andgrandmother, but there was much more to her than that. She was born onChristmas Eve, and darn it, she and her family celebrated both each year. Shewas present for the Cleveland Indians' World Series win in 1948—the last timethe team saw a championship. She loved her Cleveland Browns and wore number 19with passion and pride. She loved television and would stay up all night towatch her favorite programs. She made really yummy grits. Equally legendary toher friends and neighbors—who knew and loved her as "Betty Boop"—was herinfectious laugh, which was part giggle and part cackle, with just a hint ofthe Pillsbury Dough Boy.
Betty Ruth was my husband's Granny. She passed away fouryears ago this month, her giggle and fun-loving spirit silenced bycomplications from diabetes and Alzheimer's disease. For Granny, her journeywith Alzheimer's was a short one. We're not exactly sure when the disease firsttook hold of her, but it wasn't long after her diagnosis that we watched withalarm over Thanksgiving dinner as her mind rewound and restarted ourconversation about every five minutes. In too short a period after that, shewas gone, two months shy of her 76th birthday.
We've always wondered how Granny's life would have beendifferent if her Alzheimer's had been caught earlier, or if she had more timeto take advantage of some of the treatments available to patients with thedebilitating disease.
I'm sure the lives of her children, who faced numerous challengesas they saw to her care and comfort, would have been different, too. For toomany patients with Alzheimer's, treatment is too little, too late. And for toomany families and caretakers, the burden they must take on worsens with eachpassing day.
With these thoughts on my mind as the anniversary ofGranny's passing drew near, I had the pleasure of interviewing two gentlemenwho are pursuing a sea change for Alzheimer's treatment. I first learned aboutthe Banner Alzheimer's Institute (BAI) in Phoenix and its researchers, EricReiman and Pierre Tariot, from a recent Washington Post story, "Researchers hope to quell a surge ofAlzheimer's cases with new diagnostic tools."

"We want to help launch the era of Alzheimer's preventionresearch," Reiman told the newspaper. "It's a true collaboration betweenstakeholders, the people afflicted, the families and people at risk."
Intrigued, I sought out Reiman and Tariot for my own story,which you can read on page 17 of this issue. I learned that in 2012, BAI willlaunch two studies that will treat patients who are at high risk of developingAlzheimer's, but who have yet to show symptoms. BAI—which prides itself on providingleading-edge care for both Alzheimer's patients and their caregivers—will usebrain imaging and cognitive testing to track the impact of several experimentaldrugs in development.
"Right now, we have a number of promising treatments beingstudied in symptomatic patients, but the concern is that by the time mostpeople begin to show symptoms of the disease, it has already ravaged thebrain," Reiman says, his voice low and calm, but fervent. "Wouldn't it be aterrible shame if the makers of the most promising treatments found that theywere both safe and well-tolerated, but they threw the baby out with the bathwater simply because they couldn't get to people sooner?
"Suppose someone came along with a promising way to preventAlzheimer's disease," he continues. "By the time it was developed, it wouldtake too many healthy people, too much money and too many years longer than thelife of a drug company's patent to evaluate the risk or obtain regulatoryapproval." 
That's not soon enough, Reiman says. BAI's stated mission is"to end Alzheimer's disease before another generation is lost."
"Now is the time to launch Alzheimer's prevention research,to provide both the means and a way to test and get approval for presymptomaticAlzheimer's disease treatments," he says. "We think we have the means toevaluate them as quickly as possible. The idea of advancing this field andhelping to change this disease's impact on patients and their families—whatcould be more gratifying than that?"
We may have already lost Granny, but thanks to the efforts of Reiman,Tariot and their colleagues, for the next generation of my husband's family—andthe millions of families who have been touched by Alzheimer's disease—there ishope.

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