The June 24, 2002 edition of the New York Times printed a front page article entitled "A Deadly Disease Destroys Families as Well as Patients," discussing two dramatic cases of how HD can negatively affect families. We submitted the following letter to the editor in response to the article. To see the full text of the article, click here.
To the Editor:
"A Deadly Disease Destroys Families as Well as Patients" (front page, June 24) does not present a complete picture of the effects Huntington’s Disease (HD) has on families. While we do not deny that HD can be devastating to families, we would like to present a more balanced perspective, emphasizing that HD does not always result in violence.
The article introduces HD as a genetic disorder that “ravages” families, describing two cases that resulted in family murders. Because the article does not balance such tragedies with more positive experiences, it could mislead readers to believe that worst-case scenarios are the standard outcome for families with HD. In contrast, an abundance of personal accounts demonstrates how the shared suffering of HD can foster individual strength and family unity. For example, we recently met a Minnesota woman who has HD. Although the family does suffer, her husband and son have reacted by organizing a hoop-a-thon, a large-scale fundraiser to benefit HD research. Many widely available resources such as counseling, regional support groups, HD websites, and handbooks for caregivers help families develop constructive coping strategies.
Our message is not that every cloud has a silver lining, but rather that HD does not have to develop into a destructive storm. For every story of HD leading to family violence, there are countless examples of families confronting HD with loving support. While the search for a cure continues, we should remember that there are many positive ways of coping with Huntington’s Disease.
Students of the Stanford HOPES Project Cathy Barnard, Peter Chang, Jaclyn Czaja, Shawn Fu, Karen Hammond, Kelvin Ho, and Matt Stenerson http://hopes.stanford.edu/
(HOPES is a team of faculty and students at Stanford University dedicated to making scientific information about HD readily accessible to the public through our website.)
A Deadly Disease Destroys Families as Well as Patients
June 24, 2002 By SARA RIMER
ATLANTA, June 21 - As far as Carol Carr's family knows, Huntington's disease, a fatal genetic disorder that destroys its victims' minds and bodies as it ravages their families, first appeared in her husband's mother.
She passed it to her daughter, Roslyn, who died of it, and to two sons: George Scott, who committed suicide when he learned he had it, and Hoyt Scott, Carol's husband.
By the time Hoyt learned he had the disease, he was in his 30's and he and Carol had already had three sons. Carol, who had a low-level phone company job, devoted most of her adult life to caring for Hoyt, a factory worker, as over the course of more than two decades the disease left him unable to move, swallow, talk or think.
When her husband died, in 1995, her oldest sons, Randy and Andy, who were in their 30's, had the disease. Mrs. Carr turned her life toward their care, doling out medicine, feeding and bathing them, getting them to the bathroom, coping with Randy's violent moods. When she could no longer do those things by herself, she placed her sons, reluctantly, in a nursing home. Relatives say she was consumed by guilt for having brought them into the world.
On June 8, she killed her boys, shooting them as they lay in bed in the room they shared at the nursing home. Family members say she could no longer bear their suffering. Mrs. Carr, 63, has been charged with two counts of murder, but her surviving son, James, 38, who is in the early stages of the disease, says Huntington's had killed Randy, 42, and Andy, 41, long before his mother ever fired the gun.
Mrs. Carr's lawyer, Virgil Brown, said: "I see no evidence of malice aforethought. I see only love."
To those who have the disease, or love someone who does, this is not incomprehensible.
Susan Caldwell, for example, felt compelled to attend the Scott brothers' funeral, and afterward to offer comfort to James Scott. In 1985, her mother, Glenda Caldwell, 42, sensed the onset in herself of the disease that had killed her father and did not want to risk her children's developing it. She fatally shot her 19-year-old son, Freeman, and shot at Susan, then 18, but missed.
The violence that tore through the Caldwell and Carr families is unusual. The despair, experts say, is not. Huntington's afflicts about 30,000 people in this country; an additional 150,000 have the gene but not the symptoms. Those numbers do not include the family members who suffer, too, coping not only with the burdens of caregiving but with watching helplessly as the disease erodes its victims' personalities.
"They've changed in so many fundamental ways - they're no longer themselves physically, emotionally or mentally - but there are enough remnants left that you're reminded every day of the loss of the person you love," said Dr. Steven Hersch, a neurologist who established the Huntington's Disease Society of America's Center for Excellence clinic at Emory University in Atlanta, where he worked with Carol Carr and her family, who live in Hampton, about 35 miles away. Carol Carr and her relatives say she could tell by the look of misery in her sons' eyes that they had had enough. But they were no longer able to speak or communicate, and doctors say it would have been impossible to know what they wanted.
Because Huntington's is a genetic disease, Dr. Hersch said, there is always the fear of who in the family might be struck by it next.
That is the fear that overcame Glenda Caldwell, her daughter said. Over dinner at a restaurant near her home in suburban Roswell, Susan Caldwell, 35, a software engineer, told her mother's story. "My brother had gone out with friends," she said. "He came home, walked through the door, and she shot him three times.
"I was asleep. I remember hearing my door open. I turned my head. She fired into my bed, close enough for the bullet to graze my cheek, leaving powder burns. I jumped up and turned on the light. She fired again. The gun did not go off, nobody knows why."
Her mother was sentenced to life in prison. "I hated her for killing my brother," Ms. Caldwell recalled. "I was the prosecution's star witness. Without me, there would have been sympathy for her."
But after a severe depression and a couple of suicide attempts, Ms. Caldwell came to understand her mother's suffering. "My mother and Carol Carr were two women who both felt total despair," she said, adding that she could not condone what Mrs. Carr did.
In 1992, Mrs. Caldwell was found to have Huntington's disease. In 1994, this time with her daughter testifying on her behalf, Mrs. Caldwell was retried and found not guilty by reason of insanity. Unable to take care of her mother alone, Mrs. Caldwell spent the final years of her life in a nursing home.
As the disease advanced inexorably, mother and daughter drew close. "She smoked and she loved Cokes and Little Debbies," Ms. Caldwell said. "I would take her 12 packs of Cokes, boxes of Little Debbies and her cigarettes. I would light cigarettes and put them in her mouth. She pretty much felt that smoking wasn't going to be the thing that killed her."
Susan Caldwell buried her mother in March. "It was only the last year that was unbearable," she said.
Ms. Caldwell learned eight years ago that she had the gene for the disease. "I know it's there and now I can focus on all the things it hasn't yet taken," she said.
So she has hiked the Appalachian Trail and driven to Alaska by herself. She snorkels, goes in-line skating, meditates and spends time with her friends. She visits her neurologist regularly.
She has only the earliest signs of the disease, occasional memory lapses and clumsiness. She is hopeful about her future. Dr. Hersch, who knows her from the Emory clinic, says she has reason to hope.
Since the discovery of the gene 10 years ago, a number of promising treatments are being tested that could slow the progress of Huntington's, said Dr. Hersch, who now runs the Huntington's clinic at Massachusetts General Hospital in Boston.
While it is too late for those for whom the disease has advanced, Dr. Hersch said, "Susan Caldwell may well have a different fate."
Source:
Rimer, Sara. "A Deadly Disease Destroys Families as Well as Patients." New York Times 24 June 2002, natl. ed.: A1+.
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