Updated: 11:41 AM EDT Rare Form of Alzheimer s Disease Strikes FamilyMessage 1 of 1 , Jun 7, 2005View SourceUpdated: 11:41 AM EDTRare Form of Alzheimer's Disease Strikes Family
FARGO, N.D. (June 7) - For 16 years, Dean DeMoe watched Alzheimer's disease change his father, who died at age 58. Now, two of his brothers, both in their 40s, struggle with the disease.
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Dean himself, was diagnosed with the disease in February, though he does not yet display symptoms. Alzheimer's, an incurable neurological disease, devastates a person's memory and brain functions.
The entire DeMoe family, including six siblings and their 12 children, has been hit hard by a rare form of Alzheimer's disease that is hereditary and strikes early. They are taking part in research and trying to find hope.
Of the six DeMoe siblings, four have gone through genetic testing, including 42-year-old Dean, 44-year-old Doug and 49-year-old Brian.
Brother Jamie DeMoe, 33, of Williston, and sister Lori McIntyre, 45, of Alpine, Texas, have not been tested.
A November diagnosis brought relief to their sister, Karla Hornstein, 47, of Fargo, who learned she will not develop the disease. Hornstein's co-workers at Concordia College in Moorhead, Minn., had a cake made for her. "Now your only excuse is you're blond," it read.
"My children, they are free and clear," Hornstein said, talking about 21-year-old Cole and 20-year-old Amber. "They have been given a clean bill of health.
"Then I switch to, I've been given a gift that I will use to help my siblings to make sure they get the quality of life they deserve," she said.
Hornstein grasps onto any piece of information she can find on familial Alzheimer's disease. She has files on each of the siblings, federal legislation, as well as research studies.
"If you're involved in something, you feel like there's hope," Hornstein said.
Brian, Doug, Dean and Karla spent a week at the National Institute of Mental Health in Bethesda, Md., for a family study.
They have sent blood samples and medical records to a national repository in Indiana.
Next, they will travel to the University of Pittsburgh Medical Center for research on familial Alzheimer's. They will be injected with radioactive material so the plaque in their brains can be observed.
"This family is just a Petri dish of information," said Dr. Bret Haake, a neurologist with Fargo's MeritCare Hospital, where Doug and Brian were diagnosed in March 2004.
In his 10 years at MeritCare, he said, the DeMoe family was the first case of familial Alzheimer's he had seen.
Dean DeMoe and Hornstein were tested for the mutation in Bethesda last August.
"The thinking and worrying and wondering just drives you crazy," Dean said.
His 9-year-old daughter, McKenna, sometimes forgets things on purpose to make him feel better.
Older children must choose whether they want to know their fate.
Kassie Kinvig of Dickinson, Brian's 26-year-old daughter, decided she will be tested. She wants to have children but doesn't want to pass along the disease if she has it.
At the same time, she is thinking about her own mortality, and her father's shortened lifespan.
"I kind of feel like I'm getting the chance to get to know him, but I'll ever really get the chance to know who he is because this disease affects his personality," she said.
She said her father is now childlike. He likes to laugh and play pranks.
"In some ways, I think he doesn't realize he has it," she said.
Other times, it seems like he knows. He tells her in his own way.
Dean DeMoe and Hornstein have power of attorney for Brian and Doug. They think about when to take away their driver's licenses, when to put them in nursing homes. They've chosen a facility in Kenmare.
The family members have formed their own support group, Kinvig said.
"Even though it's a devastating disease, we've all become stronger as a family because of it," she said.
"I just take it day by day," Dean said. "What's handed to you is handed to you."
06-07-05 11:27 EDT
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